It started off as an exciting week making connections with possible future work contacts for new opportunities that are so in line with who I genuinely am. I even got to go hiking with my former gynecologist and generally life was feeling manageable within its usual cluster of symptoms from multiple diagnoses and chronic pain that a specialist FINALLY looked at my spine MRIs validating how real my pain is as well as troubling that my spine looks as it does.
Then my dog got sick. His eye was swollen and shut when I got home Wednesday. At the recommendation of a very knowledgeable dog trainer contact, I put warm compresses on it throughout the night, so night one of not sleeping.
I saw very early on Thursday morning, my dog was now in extreme pain and a message to my veterinarian friend from high school up in Oregon said to take him immediately as eye problems can go bad quickly. I had called 7 vets the day before and none had openings for months.
So we slugged off to the emergency vet Thursday morning who was glad I got him in. He has a very deep corneal ulcer in his eye. He’s in danger of having his eye implode, explode, I don’t know. It was a blur as I handed my debit card over to pay the huge bill fully knowing veterinary care is expensive, but it’s not really as I’ve learned from my veterinarian friend in Oregon that the charge is barely over what they do to cover their expenses. If I had gone to the emergency room as a human with an eye emergency in the US, even with insurance, I would have paid thousands and not received the loving kindness my dog and I both got.
A sack full of pills and a warning to get the medicine in his eye every 4-5 hours. It was VERY important. Oh, and come back tomorrow to see how it’s progressing as early as possible. Night 2 of no sleep.
I didn’t get him early. Instead I read my lymph node biopsy report and looked at my online portal at my blood test results in disbelief. How is this happening to my body when I’m working to be SO healthy? How and why and what more could I possibly be doing… Nothing is what my doctors tell me. One in particular is very empathetic to my trying so hard and can tell she genuinely feels for me within the proper boundaries of a medical relationship.
So off we go back to emergency vet as I feel terrible for the other dog as he yelps and cries so loudly as the two have never been separated. He does it the entire time as I can hear him when I pull into the garage still crying for his sick brother.
The emergency veterinarian staff is wonderful. I guess there’s something about seeing my now cone head dog sitting regally on my lap as I push myself into the vet in my sparkly pink wheelchair. I trained him. So I think we probably both got some much needed love and smiles that I can’t see behind masked faces, but I could feel them.
So I know I’m going to go on night 3 of no sleep and will be a string of at least a week with the medication regimen and instructions to come back in 3 days.
I’m managing, but I also recognize when I need support. So I reach out to get emotional support as I realize I’m overwhelmed with my sick dog and my new test results coming in the past couple weeks, like beyond over my head. No one talks anymore. So I send out my plea in a message. I get “you’ll be fine in a week”.
What she doesn’t understand is I’m “fine” now. Several years ago, this would have brought me to my knees. I couldn’t have handled any of it. I would have panicked. I’m not panicking. I’m handling it. I’m taking care of my dog. I’m checking and rechecking my bank account to make sure this will work and what I can put off paying or not. I’m handling it. I’m already fine.
I’m fine until a friend says I’ll be “fine” in a week. I’m fine now, I just need support. I prefaced it with “i know rare diseases are hard to understand”… So I got nothing. I’m not in the mood to reach out anymore.
As is the beauty of neuro immune diseases, the stress of taking care of my sick dog and lack of sleep and my reaching out makes my body stop. My body has this torturous way of telling me I have to stop by literally making me stop.
Early this morning, I realize my legs are completely paralyzed. My right hand is useless. My left one works enough to hold my water bottle, except I dropped it with 24 ounces of water all over me, twice. Oh well.
My dog who usually comforts me needs me, so I let his plastic cone head poke me in all sorts of uncomfortable ways as if I don’t, he gets super agitated, trying to rip it off and attack his furry brother.
So I write this post with my left hand knowing with rest, my body will go back to its “normal abnormal”, which seems to change constantly as the new diagnoses pour in baffling doctors who can’t figure out why.
I have my dear friend in Florida who we message several times a day. She knows. She sees me. I have several wonderful people in my life in different capacities, but I’m just too tired and weary to reach out again.
I scribbled out a brief poem with my left hand on my exercise of reaching out and the invisibility of being a strong woman inflicted with several rare diseases that don’t even make sense to me. I hope to turn it into a visual piece of art someday.
As I said, my dear friend in Florida has helped me through. Others have made offers to help in other ways. Sometimes practicality says I just share my pillow with my sick dog in hopes we will both get enough rest to be climbing literal mountains soon.
For today, my legs and hands say “no thank you, maybe another day”. And I’m glad I’m strong. And I’m glad I know good people. And I’m glad I know who not to reach out to now. And I’m glad my left hand works enough to write this. And I’m glad I take incredible care of myself as even though a sick dog and body that quit today aren’t my ideal, I’m still breathing and can’t say a few years ago I could have made it through any of this. I’m not happy. This isn’t positive, but it’s still growth.