Month: October 2018

Sugar and Spice and…NO.

Posted on by akiwifreund

Today was dedicated to running around and getting prescriptions and a flu shot. Nothing special about today except the weather was grey and rainy, which is not at all normal for Arizona.

And oh god, a message that started with, “I’m sending you this message because…”

I didn’t read it while I was out in public. It was from someone I used to be close to, who dropped off the face of the earth for the thousandth time. She sent it through Facebook messenger, so I’m not sure if she previously deleted my email addresses.

The gist of her message was, “I don’t expect a reply. I cut off contact with you because 20 years ago you didn’t bring me food when I was sick and you went to Las Vegas with your boyfriend instead and you didn’t call me. And one time when you were visiting you didn’t call me, I had to call you, and you said you were getting really busy, and I could drive up to St. Cloud to meet up with you or go out to eat with you and your sister and brother-in-law and it offended me.”

So let me explain a few things. When we lived in New Mexico at the same time 20 years ago, she had a pager she would never respond to. That was how I was allowed to contact her. Also when we lived in New Mexico, she was a heavy pot smoker, and whenever she smokes weed, she starts fights. All of her other acquaintances would ask me what was wrong, and I told them to keep her away from the weed if they didn’t want to fight. They finally made the connection. And for the last few months that I was there, I couldn’t get ahold of her at all even after driving to her last known location because she cut off all communication. This is a repeating pattern.

Whatever visit she’s referring to where she had to reach out to me, again, I have never been allowed to call her. She doesn’t believe in talking on the phone. Keep in mind that texting has not been a thing for the entire last 27 years that she and I have known each other. She didn’t like to talk on the phone because it made her nervous; the reasons why changed over the years. Email was not always practical because, again, it was not always portable. So there were times our relationship was limited to mailing letters back and forth. When I used to travel, sometimes I would only be back for 3 or 4 days, and I would have to see multiple households because my parents were divorced and remarried, plus my siblings were grown and married. I was fucking trying to make everyone happy. Plus, hey – I was flying into their state. The last time I flew into the area (not as a resident), I DID see her, stayed at her place and saw her boyfriend perform with his band.

I’m not going to keep score on who didn’t fly out to see me. She had her own shit to deal with. But to be told I’m not worthy of friendship because of these things makes it pretty easy for me to close this chapter.

Let’s Play Family Feud

Posted on by akiwifreund

This week has been really tough.

First, I had to run to the pharmacy to get some meds. I belong to a reduced rate program for disabled people and it’s contracted with a cab company; I just have to let them know I’m in the program when I call. I did that. The phone rep didn’t want to take down my address or the address where I was going. I found out when I got in the cab that the rep also didn’t specify that I was on the program, because the cabbie was expecting cash. He was pissed. He called into the home office and kicked me out of the cab, telling me to call for a different one. I had already waited 45 minutes for him (but I didn’t tell him that). My anxiety went through the roof. 

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But then he called me back and said the home office fixed it, and he would take me – but he wasn’t happy. I ended up giving him some extra cash on top of my fare, which he appreciated, but I had to fight back tears when all of this went down. I did everything right, yet I was punished for the fuck up. 

Two days ago, I had to go to an appointment because of my tunneling infection disease. If any of you have hidradenitis suppurativa, or you feel brave and have a strong stomach and you want to see videos, have at it. There is a guy here in Phoenix who has posted some pretty gnarly videos of his hiney. Mine DOES NOT look like that (yet), but I do have lots of scar tissue and tunneling. The crazy thing about this disease is that if you drain or squeeze any infection out, it actually forces the tunnels back further, like what a gopher does if you try to chop into its tunnels. The infections are incredibly painful because of the acidity of the bacteria. It’s also not the oil glands that clog up, but the sweat glands. My active areas happen to be the places where I sit. Most women have trouble under their arms. Bless you, ladies, for having it anywhere. It’s three times more common in women than it is in men.

Anyway, I had to get one spot tended to (I have over 50 active spots right now) because it was getting so painful that I couldn’t sleep. The doctor was trying to inject me with steroids and Lidocaine, not realizing that Lidocaine doesn’t work on me. So…I don’t get numb. Not one little bit. Before anyone came in to work on me, I had another panic attack and more than a few tears, feeling overwhelmed by everything happening at once.

At some point when I was sleeping last week, I hyper-extended my left knee outwards. When I got out of bed, I could barely put weight on it, and I noticed bruising around the knee cap. My quadriceps above the knee cap also swelled up. At first I put on a couple of knee braces, but then my left hip started hurting from the misalignment as well, so I gave up and went to my pain doctor. The doc and his nurse practitioner were reading up on my conditions and asked me to do the laying down/sitting up trick to move around my CSF. I got a referral for physical therapy for someone who specifically knows how to treat patients with hypermobility, but I had to put it on hold, because my short bus transportation has been a problem. 

In August, I received a notice from the company running the accessible transportation in the Phoenix area that I would only be eligible if the temperature was 90 degrees or greater. I sent in a 3-page letter and some highlighted medical records. I was scheduled for a hearing to try to overturn that decision on Tuesday. I received a call today from an extremely cheerful woman (think Sesame Street) who told me that they decided to approve me unconditionally, no hearing needed. I thanked her and told her that it had caused me a lot of stress. I wanted to swear at her but didn’t want my privileges revoked.

So now, tonight. There was a meme going around of Trump and Kanye making out, because let’s face it, that’s what they do. A cousin who is all the way up Trump’s ass decided to comment on my sister’s post and say that he was disappointed in her post, that he loved our dad who passed away young, that I (Chelsea) had unfriended him (the cousin) for his viewpoints and that he still loved us. Well, I’ve got some screen shots – not all – so you can read them. But the conversation that led to me unfriending him in the first place was him telling me that he was tired of paying for me. Basically, he believes I should die rather than get healthcare. This is someone who has been to rehab and probably needs to go again. But he’s telling me to get off my lazy ass; I must be lazy because I’ve had 10 failed brain surgeries.

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There was a little more that I typed before I blocked him, but I ended it with this:

Because he really should eat a bag of dicks. He wasn’t around for any of my surgeries, or for the 7 years it took me to figure out what I had with very little help with any of the 60 doctors I saw up to that point. I guess he even threatened me for crossing him, but I jumped off that conversation before seeing it, but other people did. What a great guy, huh?