That Time I Went Back To Arizona

About five months ago, I decided fuck it, I’m going back to Arizona to visit. I miss everyone and everything. A few weeks after that, I figured out what started this whole thing with my brain. (Yes, I mean figured it out, not the doctors.) I knew I’d have a place to stay with friends, and eating out was out of the question, so I’d just have to come up with a plane ticket. Done. It might be my last opportunity to travel depending on how much worse the scar tissue and the brain damage gets – literally no one fucking knows.

I have about 35-40 people that I would have liked to have seen, but I was only there for about 8 full days, so it was impossible. One night a bunch of people came over and we had a little potluck and hung out. The rest of the time everyone was gracious enough to drive to me, or I took the short bus to see them.

It was my first time traveling without being able to drive, either at home or my destination. First of all, nothing can happen on a whim. It took me about 2.5 weeks to assemble all of my medications and a vog mask, and that included negotiating with the insurance company to get an override on 8 of my medications that would have needed refills while I was gone but couldn’t get in Arizona – they can only be done in Minnesota, because I’m on medical assistance. I also had to make a trip to a compounding pharmacy.

Then the day before I left, a medication I had been trying to get for about 7 weeks was finally approved, so I had to go and get that – but it was such a high volume that there was no way I was going to be able to fit it in my luggage, so I decided to start it after my return. Every time I have to go somewhere, I have to request a ride from Metro Mobility – but I’m only allowed to call one to four days ahead of time. I can’t call on the same day. So I was on a dead run (or as much as I could have been for someone who is half blind) up to the day I left.

It was so worth it, though. Arizona was all blue skies. As I’m writing this, we’re getting rain in Minnesota.

Hopefully my friends know I love them, but I forgot to take pictures of them. Apparently I shoved them aside and made a beeline straight for their animals, which I am deathly allergic to. I did a little planning for that too. One of my doctor visits beforehand was to get my regular and steroid inhalers refilled so I could start on those prior to my visit. I also packed extra diphenhydramine and Claritin (above the 12x daily dose I already take) in anticipation of the fur balls, and every time I came home from a house with pets I changed clothes and put the contaminated clothes into a plastic bag and did a big scrub down.

First were the rescued baby kittens, all black except for a few white spots on some bellies. My friend was just grabbing and distributing them around the bunch of us, and I just happened to get my soul mate – a little one who has neurological problems. It just wanted to get as close to me as possible so it curled up tight against my neck and slept. Once in a while I felt it have tremors and twitches that were not at all normal. I was laying back so the fluid wasn’t trapped in my cranium, and I swear, it was heaven. I wanted to stay there forever. At one point the kitten woke up and started putting its little paws right on my mouth. (I’m in the blue.) I did get hives, but they may not have been as bad as they could have been because apparently the night before the kittens pooped all over each other and so they had to have an impromptu bath, which they loudly protested.

Back at my host family’s house, a large lizard showed up on their property wall. Usually they do not get this big!
20171007_104947
I was lucky enough to be able to spend two afternoons with my friend and his wife. He was instrumental in getting me to be active on Twitter after reading my blogs, which has led to guest spots on other blogs, podcasts, and our Blab series (now deceased because they couldn’t figure out how to make money off of the platform). These two are quite funny; the male, bright orange, is loud and LOVES women. The female, green, is a lot more quiet but likes to ring her bell ball to communicate. The male will say both of their names together and then swivel his body from side to side when he is showing off or pleased.
20171015_152522
Next were my good friends including a couple and their live-in mom. They were usually the first ones I would call when I needed a kitty fix while I lived in Arizona – they had three kitties I knew well. Within the past year and a half they ended up adding another cat and dog under pretty terrible circumstances. Their friends relocated from another state; my friends didn’t realize there was drug addiction and abuse happening. The kids have since been placed in foster care, and the animals were traumatized. Actually, the really big, long, grey kitty seems mostly okay, but the dog has suffered terribly.

When I came to visit, I was told to expect him to pace and whimper. I was also told that I shouldn’t expect him to eat, or approach me, because anyone else who has visited hasn’t had any success even though they were animal lovers too. So this poor, beautiful dog did start pacing. I made sure that I moved slowly, and told him that he was a good boy whenever he paused to look at me. Then I put two treats on the back of the sofa and turned away from them, and eventually he worked up the nerve to get close enough to take the treats. Then he paced close enough to smell my hands while I wasn’t looking, and then quickly paced away again. While this was going on, he was carefully watching how I was interacting with each cat, making sure I wasn’t mean. A couple of times I closed my eyes. I suspect my friends thought I was tired, but I was actually sending him messages of love.

We sat down to dinner, and I couldn’t eat part of mine because of an allergy, so I put it down on a plate for the dog. Another win! And he came over multiple times to sniff my fingers. I made sure again to not be aggressive. I told him over and over he was good.

I stayed long enough to go on his last walk of the evening, which he loves. He wasn’t even confused about there being a strange lady with him on the walk until one point where he crossed over to me and then suddenly was like, “Holy shit, who is this???” and then quickly walked on the other side of the sidewalk.

At the end of the night I was saying goodnight to everyone (read: handing out the last pets to the pets), and the dog was near when I was petting the pretty calico. He was again watching very intently to see if I was being mean. So I carefully got down on all fours and made myself small, put a treat in my hand, and put my head down, and HE ATE OUT OF MY HAND. Everyone was stunned and thrilled.

My friends ran me back to where I was staying, and let me know that when they returned home, all of their animals were lined up at the door, as if they were waiting for me to return. They had never seen that happen before.

The last evening before I flew home, I was able to visit with a former co-worker whom I had the longest work history with – something like 8 years together on our team. I also remember when she had her kiddos – vividly! Our conversation went something like:
Her: “I feel like something isn’t right.”
Me: “You’re in labor. Go have your baby.”
Her: “I’m not really sure. I’m going to wait a little longer.”
Me: “I don’t think you should wait. I think you should go.”
45 minutes later: Baby.

They have two cats and a dog. I failed to catch a photo of the dog, but she was a sweetie. The white cat, Gracie, is quite elderly now, and doesn’t put up with anyone’s shit, including the dog’s. The kissy photo was taken right before Gracie got pissy about the dog bothering her. Seamus is a year-old instigator of trouble and very handsome.

Obviously the mast cell disease is preventing me from being a crazy cat/dog/bird lady, so I suppose I should be thankful.

Anyway, it was really difficult to come back to Minnesota. The night I flew home, my friend’s little boy called me and told me to come back. Sheesh, kid – right in the feels.

Advertisements

Now You See Me

About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis