“I CAN’T SEE!”

In 2013 I lived in the mountains of Idaho, and I ran a small resort there. In late summer of 2012, and again in August 2013, we had massive forest fires, with so much smoke that folks had to wear masks to breathe. I’m an avid fisherman & enthusiastic though somewhat unsuccessful hunter. I’m also a photographer, wildlife mostly, though I’ll do weddings for friends. Around late Sept. & early Oct. of 2013, I began breaking out in hives-generally after being outdoors. In spring 2014, I finally went to the doctor in an attempt to find out what was causing this allergic reaction.

I was tested for allergies to everything out there…sage, buckbrush, pine, fir, etc. with zero results. Doc figured it might be the sun, and I took precautions, so I wouldn’t hurt. I was given a steroid treatment in order to slow it down. I began to swell, what I now understand as dactylitis, though it was not restricted to my extremities. I began to swell when clothing caused pressure on my skin, if I drank alcohol, arch supports in shoes…sex.

Blah.

We began to consider that it might be related to the last fire-structures were burned in that one, causing the smoke to be a bit more toxic…but we had no proof, and it was SO random. I’d be bad for weeks, then okay for a stretch.

My job was super stressful in summer, I would work for 3-4 months with only a day off a month to go get food and return to the mountain. A 100 mile round trip. Basically a 24-7 job. Aside from the “hives” I was in great shape, could hike 10 miles a day easy, clean 15 rooms, juggle weddings, events, and lots of campers & motel guests. I worked out regularly in winter, snowshoed and spent spring & fall hiking & fishing. I would go visit my grandkids in May & August for about 3 days each. At 55, I considered myself healthy & energetic…

In Spring of 2016, I was visiting my son, his wife & my grandkids~that visit, my other kids showed up too! A whole family gathering. Pretty awesome, since I was headed into the dreaded 3-4 months of nonstop work…

I spent it on the couch.

My eyes were itching & burning. My daughter-in-law worked for an eye doc, so she called & asked what to do. She said cool cloth & some eye drops for dry-eye. So I did. I drove the 300 miles home with my eyes dry as a bone. Ouch.

That summer, I began having extreme liquid coming from my eyes. I began to see halos of rainbows around lights, and my eyes were SO itchy and achy. The light caused EXTREME pain…I couldn’t wear my contacts, and without them, I could see shapes, and color.

That is all.

But…I still had a job to do. 3 pairs of reading glasses in order to clean rooms, (I had a reputation for “the cleanest rooms in Idaho”, and I wasn’t gonna let it suffer!). I couldn’t take a picture of anything…OH CRAP, I had a wedding to shoot in October…I was committed.

I COULDN’T SEE…

My first day off in August, (the 28th lol) I went to my GP, & she did a rheumatoid panel, she didn’t see a lot, but she set me up with a rheumatologist in Boise. (100 miles-one way) I couldn’t see to go there, so I made an appt. at my eye doc, (in our local town) who promptly went into a tizzy, shoved some medication in me & had me get a ride to a glaucoma specialist in Boise. Doc said I had uveitis. 58 lbs of pressure in my left eye, and 54 in my right. He gave me eye drops, which relieved my symptoms greatly.

I visited the rheumy, (the next week) who took lots of blood & came up with zero diagnosis. (probably all in my head) And the eye doc later the same day. He asked me if I had been having certain symptoms, and I said yeah.
My next visit to the rheumy (2 weeks later) I was told by the PA that I had Psoriatic Arthritis. She said that “we didn’t have any diagnosis until after talking to my eye doctor.” At which point, she had ultrasounds done on my hands and feet, proclaimed that I had pain there, (which I did not) and said they wanted me to go on Humira.

I refused.

She actually became quite annoyed, and we somewhat email-argued about it. I went back to my GP, got a referral to another Rheumy, and started to work on a plan there. (which was basically to keep going to my GP & eye doc until I felt that my quality of life warranted a biologic.)

I see my GP regularly, and there’s more to my story, but I’ll save that for another post…

BTW, I photographed that wedding, thanks to my awesome eye doc. 🙂

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (5)
  • GCM
    3 months ago

    Hi there, I have PsA with Uveitis (HLAB27+) with frequent bouts of Uveitis until I started taking biologics (Tried Remicade/one infusion; then to Humira for almost 5 years; after a 5 month break, I am now taking Cosentyx (1st injection yesterday.) I’m also on 25mg Prednisone until we can verify the Cosentyx has “kicked in’…
    I’m writing to say that you will want to be very cautious with Uveitis and getting treatment quickly when it flares! (Uveitis flares are how I was diagnosed with PsA, and tested positive for HLAB27+) I fought against taking a biologic (scared of the side effects) for a year after I reacted negatively to Remicade.

    I was on high dose oral Prednisone, along with eye drops, which only kept the inflammation down a bit… I had Prednisone injected into my eyes as well. I ended up with very thick cataracts (from the Prednisone) which could not be removed until my eyes were flare-free for at least 3 months…resulting in me being legally blind for 6 months. Also, the Pred eye drops caused my IOP to spike to 60+ in both eyes..sending my doctors scrambling for medication and an eye surgeon.

    After battling my severe Uveitis, I finally decided to try Humira (so I could have the cataract surgery to see again)….which worked (for almost 5 years…until I had too many infections.). I have been VERY lucky! I was told (after the fact) that my doctors expected I may lose an eye, and not retain anything near my normal vision (corrected by glasses). I DID keep both my eyes, and have 20/20 vision with glasses…but because of Optic Nerve damage, I have lost my periphral vision…which can be very annoying at times, bumping into people and things.

    I hope everything works out for the very best for you; good luck & best wishes!

  • Pinky5860 author
    3 months ago

    Thank you for your comment! I have been treating my uveitis with eye drops. It has settled down tremendously. Eye doc on last visit was pleased-no damage, no cataracts. My pressure during that summer was 58L/56R, and that was the day I drove to town…a “good” day. Doc told me the same-lucky I didn’t lose one or both eyes.
    I have been lucky to be in a remission since my last steroid shot in Jan this year. (2018) Beginning to come out as weather changes, but I’m optimistic. No biologics till the very last (if ever).
    I have found out that the arthritis has already decimated my knees, and most likely my elbows/shoulders.
    I have made life changes, and one of them is to be in the gym 3-4 days a week lifting weights. My breathing is at around 50% due to lung inflammation, so my cardio is limited to 20 minutes, but strength training has helped me a lot.

    I’m not giving up yet, I’ll go down fighting!

  • VickiN moderator
    8 months ago

    @pinky5860, I’m so pleased that you were finally able to get a proper diagnosis for the uveitis and that it’s under control now! You are one tough cookie, that’s for sure. Feel free to share hiking or wedding photos with us! Thank you for your story,
    -Victoria, Community Moderator

  • Pinky5860 author
    8 months ago

    I never realized how much pain I was in. I spent 17 years in an extremely abusive relationship, so for me-pain is not something that I detect easily. 🙁

  • VickiN moderator
    8 months ago

    @pinky5860, I’m very sorry that you went through that. Are you safe now? I wish I could be there to give you a hug in person. It’s so important that you know you don’t have to go through this alone.
    -Victoria, Community Moderator

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