Let’s Play Family Feud

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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Andrew2
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?

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Did I Ask You?

One of my fellow rare disease/chronic illness warriors/sufferers posted a thread on Twitter tonight. She’s quite well known because her condition is very unusual and obvious, but she doesn’t shy away from the camera or public speaking engagements. Her post tonight detailed an eye doctor visit that was made all the more difficult because 1) The eye doctor googled her condition rather than talking to her directly about it – and she is a much more knowledgeable source than Google; 2) The eye doctor left the light shining in her retina while he took a personal call, after finding out that she is extremely light sensitive because of her condition. 

Her post had to do with the appalling way that she was treated. As each of us who have chronic and rare diseases either have done or would like to do, she had some choice words for the doctors following her as pointers on how NOT to treat rare disease patients. At no point did she ever say, “Gosh, I have no idea what to do. I don’t know who to talk to about this or how to go through the proper channels [in Australia] to file a complaint.” There wouldn’t be any reason for her to do that. She’s lived with this condition all of her life and she is actually a very vocal and active advocate.

But of course, there’s some asshole who decided to announce that she should file a complaint. 

No. Shit. Since the original poster wrapped up the thread by saying that she confronted the doctor and quite forcefully said that the rare disease patient is the best source, and a light sensitive patient shouldn’t be left in front of the light scope while a personal call is taken, and she would be following up with the office, and she just looked forward to trying to relax after being in a lot of pain, I responded. I said, “It’s okay – she knows how to handle bad appointments. She’s had this condition her whole life. She’s an advocate and speaks out often.” In other words, go fuck yourself.

Also recently, a young woman ended up in respiratory failure and was in a medically induced coma and on a respirator. She lost days of her life. When I say young, I mean young. Her significant other has been updating us and has been an absolute rock, but they are both scared and worried and facing big changes. Wouldn’t you know it, in the middle of the updates, I see something about, “Can you guys not offer advice, please?” She’s also a rare disease patient with some of the same stuff I have, but some is different, and I know some asshole is telling her that she needs to do yoga or chew on bark and vitamins from the Himalayas or something. So to whomever is sending her unsolicited advice, fuck you too.

Why does this get me so worked up? I was always a sick kid who grew up to be a sick adult. I became really sick in 2010 and it has been a mystery that has been mine alone to solve; no one has traveled with me to see 65 doctors, or see me through all 10 surgeries. There have been a few people who have helped to fill in some gaps, but they have been sparse. I know what I’m doing. I am educating doctors and nurses and physical therapists as I go along. I teach people how to maneuver through insurance. I help people search for doctors – even when there’s a few thousand miles between us.

I have never said I don’t know what to do, I don’t know who to call, I don’t know where to look, I don’t know where to go, I don’t know what to eat, I don’t know what to take, I don’t know what I like, I don’t know what’s best for me. And though I am currently well below my natural quota of 8 doctors, I know how to care for myself.

The next person who says, “Oh, it must be the acidity” after I tell them I can’t eat pineapple because I’m allergic to it, I’m going to throat punch them. Fuck them too. And fuck anyone who gives me unsolicited advice. I’m so over it and you have been warned. This video is much nicer about it, of course.

Save The Date

Statistically, Minnesota is one of the worst or the worst state in the U.S. when it comes to wait times for disability processing. I didn’t know this when I relocated from Arizona to Minnesota to try to figure out what was going on with my body. This article from the Minneapolis Star Tribune states the average wait time is around 570 days from filing to have a judicial review. I just got confirmation that my hearing is set for March 28th, which will put me at about 770 days of filing the appeal (and almost 3 years to the day of filing the initial claim of disability). The back log just keeps getting worse.

I’m not sure I would have done this any other way. As horrible as it has been with trying to get doctors to take care of me in Minnesota, I did finally get three diagnoses that I have been missing for years in addition to what I already knew. I forget what my count was when I entered the state, but I’ve seen 64 doctors since July of 2010. This has not been an easy process. There is no clear path.

Thankfully my allergist has already agreed to fill out paperwork for my hearing, and my counselor has as well. I will be meeting with my primary care doctor and pain doctor next month to ask the same from them. I’ve been rejected by every neurologist and neurosurgeon in the area as well as banned in writing by the Mayo, and I can’t go out of state because I’m on Medicaid so it’s not allowed, so I’m not quite sure how that is going to be looked upon by the judge. There’s absolutely nothing I can do about that.

One incredible resource I wish I had stumbled upon before I started this process but am eternally grateful for is the blog How To Get On. There are sooooooooo many links/ideas/resources/testimonials that it sometimes boggles my mind, and I really can’t imagine how many man hours it took her to put it together. It’s unfortunate that the author sometimes gets reported and blocked by Facebook for either posting “too much” (seriously??) or for questionable posts (again – say what??), so we have to keep it circulating so as many people as possible benefit from its content.

MedCline For Heartburn – A Crazy, Functional Pillow System

Do you suffer from heartburn or GERD? I have, for years. I’ve gone through a number of tests to find the cause of it and also to make sure that the valve between my stomach and esophagus isn’t degrading from the acid backing up (it isn’t). It is the absolute worst feeling to wake up because acid comes up all the way from my stomach into my mouth at night. I’ve also tried a combination of medications, but sometimes they don’t do the trick, and it’s not always safe to be on them long-term. Now I know my acid reflux is likely caused by my mast cell activation syndrome. 

So I saw an ad for this pillow system and decided to give it a try. It was especially appealing to me because I had surgeries done on the right side of my body for three years and had to lay on my left, and had torn up my left shoulder terribly – I’m still doing physical therapy, getting injections and dealing with regular pain continuously now. The base inclined pillow looked like it would help me a lot because it actually has space tunneled out for the shoulder and arm:

What you see propped on top of the wedge is the body pillow that is also available with the system. You can buy the wedge by itself, but honestly, I don’t recommend it; I’ve tried to sleep without it, and it’s not at all comfortable to me. Here’s a pic that shows more of the body pillow, which is filled with memory foam bits:
2016-08-25 11.15.10Both pillows have covers that can be unzipped and washed, which I do often. 

To sleep, I first tunnel my arm through the wedge, and then I wrap my body around the body pillow for support. MedCline recommends that it’s best to sleep on your left if you are able because of the shape and functionality of the stomach, but it’s okay if you aren’t.

MedCline recommends that you buy your pillow according to your height and weight. If you meet one requirement but not the other, I would say go with the height and not the weight, because where the wedge inclines makes more of a difference for you than anything else.

The pillow system is shipped for free and they have a 60-day money back guarantee. MedCline wants you to give the pillow system a try because they know it will take some getting used to, but they believe their product is worth the time and effort. I believe it too. I showed my pictures to my gastroenterologist because he had never seen or heard of it before, and he knows countless patients who sleep in recliners or who purchase traditional wedge pillows or try to sleep on stacks of whatever will keep them propped up at night.

I agree with MedCline – it does take time to get used to. When I sleep on it, I don’t have problems with my shoulder or arm hurting or going numb, and I don’t have problems with my acid reflux. That was my ultimate goal when I bought it.