#alinker

[chibifukurou]

Help keep a friend rolling

After an increasing series of falls, friend is looking for help funding a used Alinker mobility bike.

With their shoulder currently having issues healing, they are looking for a foot propelled option that will let them safely get out of the house.

Thank you for any help you can offer!

Help me keep Rolling

I'm need help purchasing a refurbished foot propelled mobility aid called an Alinker to assist with my EDS and vertigo. You can find out m

[voidlingscorner]

Keep me moving! #lupusfibrowarrior #alinker #keepdisabledmommygoing

This gives people the ability to be in control of their life again!!!!! It is so much more then just a #walkingbike! It will help to #homesc

Hi yes, this is my mother's Alinker campaign. My mom so deserves this so please please please reblog this and if you can donate! It would make my mom's life SO much easier toting around us five kids!

[jones-jonesnyc]

Of course Selma got the front spot. #alinker #keepmoving (at Bedminster, New Jersey) https://www.instagram.com/p/B3sfrDehkDy/?igshid=n889er5nn1pz

[jones-jonesnyc]

On the move. #alinker #equinetherapy #neverstop (at Striver's Row) https://www.instagram.com/p/B3cqpBYhIbe/?igshid=sxup954y36fs

[voidlingscorner]

Keep me moving! #lupusfibrowarrior #alinker #keepdisabledmommygoing

This gives people the ability to be in control of their life again!!!!! It is so much more then just a #walkingbike! It will help to #homesc

I know I've already made one post about this but I'm going to make another because this is really important to me.

This is my mother's campaign for the Alinker mobility device. My mom was diagnosed with Lupus, Fibromyalgia, Ménière's disease along with 13 other diagnosies. My mother is a fantastic woman and all she wants is to be able to keep up with her family without being stopped by her illnesses.

She's already almost made it to the halfway point. Please, give this a share so my mom can keep up with us five kiddos without being slowed down. Thank you ❤️

[survivingsusac]

Adulting Update

Vitamins

We’re going to start today off on a weird note. I go to a Curves gym because fitness is important. I may be not the most mobile person anymore (thanks a TON Susac) but still, health is important. At the gym a person tells me about this vitamin supplement that has changed her health and has improved her quality of life. She’s like, let’s set up a call and you can learn all about it and get some and be healthier. I found out the name of it and do some research (that’s Adulting 101) and find out the stuff is absurdly expensive and less bioavailable (read: your body can’t use but 18% of the nutrients in the pills) than the liquid vitamin that I have access to that are half the cost (which are 98% bioavailable). I let the lady know that while I appreciate her sentiment, I will let the professionals and specialists in Susac Syndrome be the ones to guide me through whether nutrient supplements will heal my autoimmune disorder. Spoiler: they won’t. I will take my liquid vitamins, though. Be healthy, y’all.

Welcome home, Link!

On another note, I am still totally hyped about the awesomeness of my local bike shop.

The guys never fail to be friendly and welcoming when I walk in. Ken greets me by name today and says you’re here to pick up Link, yes? Why yes, Ken, yes I am. You’re going to let me pay you guys today right? Recall, they have (1) replaced my saddle, (2) patched my flat rear tire, (3) ordered me two new tire tubes, (4) installed the correct tire tube, (5) replaced my saddle post. All at no charge so far. And today Ken let me pay him today, a whopping…drum roll please… $37.55.

These guys are like legit superstars.

Baclofen

We’re changing subject to include stuff about badass doctor Egan who can no longer be my doctor because he got a new job (remember him? He hasn’t been brought up in a minute).

So my UCD neuro immunologist who is supposed to replace him (PYSCH, because no one could ever adequately do that) began me on a new drug (Rx), Baclofen. It’s a CNS suppressant that was intended to help my wacky gait (it’s a spastic gait). Well, long story short, it did not. It made me super sleepy which I don’t have time for in my life, and a fall risk. It was the complete opposite of what she lead me to believe it would accomplish for me.

I send her literally three messages over a month requesting responses to my concerns. No response, nothing. So I do some research and safely and successfully wean myself off the Rx. I finally get an appointment with her to follow up and she tells me that based on the increase in symptoms, I am experiencing a relapse.

She asks me what I did last time I had a relapse. I let her know that I’ve never had one before, that my immune systems’ response to this Rx that it’s never encountered before seems to have sent me into my very first one. She sets me up with a five day pulse of this infusion called Solumedrol, AKA methylprednisolone. Today is my last day of that. Tomorrow she has me taking oral prednisone for 18 days.

My thoughts are, “This had better work.”

Now, circle back to Egan.

My mom/rock and I go out to dinner with him Monday night. We’re just chilling eating cheese burgers and of course, he can’t take off his doctor hat. He's watching me walk through the restaurant, asking me questions about my alleged relapse, and doctoring me between my complaints to him about his decline in Pokemon Go activity. He’s seriously been slacking lately.

Anyway, apparently, relapses can’t be confirmed without quantitative data. Relying only on reports of increases in symptoms is qualitative. NOW we’re talking; speak science to me.

MRI

So about a month ago, this new UCD neuro immunologist who Rxed me Baclofen had ordered a series of MRIs. Brain, C-spine, and T-spine. Here’s our qualitative data.

I never acted on those things because UCD charges things like facility fees, technical fees, and procedural fees that aren’t covered by the copay that I pay already at each appointment. Heads up, they also don’t dislose the estimate of the cost of these things unless you specifically ask for it. When you do, everyone points fingers and transfers your calls for days. By the time you finish doing their jobs for them you find out that it will be something like $2k for your care. And why does the hospital charge for things like facility fees (rent for the room the appointment takes place in), technical fees (that’s the computer the doctor charts your notes on during the appointment), and professional fees (that’s the other radiologist or doctor who reads the imagery or test the doctor orders)? Because hospitals are a business at heart and need money to survive. Patient's money.

Your girl can’t afford thousands of dollars for the hospital to just make money off of patients. Go charge someone with expendable cash, not someone trying to live off of $400 a month.

But now I’m searching for the least expensive way to get these MRIs done for this quantitative data for bad ass Egan. ‘Cuz we all know that he’s going to ask me about the images once they’re done. I couldn’t get rid of him now, probably not even if I wanted to. Eventually, thanks mostly to my GP at Sutter, I found a place that will save me $500 so I’ll only have $1.5K to pay. I’ll be paying the bill until the end of the year. But eh, such is life.

Speaking of money

I signed up for my own dental insurance coverage. So far in my life I’ve been covered by my mom because I was a minor and then by my husband because I was married to the useless pile of flesh and asked for coverage for myself and our daughter. She was five by the time he got around to it. Useless. Pile. Of. Flesh. But now I am not a minor and I am cutting free from the useless pile of flesh! So I get to adult and get my own dental insurance! So I want to keep my dentist because I love him tons (medically speaking) and Lee’s been my dentist since I was like 10. First I talk to his office about the type of insurance he accepts. Then I call the insurance company and talk to Gilbert (no, not Gilbert Blithe) and we talk about options and financial commitment and the types of procedures covered. Within the day I have chosen the best coverage for myself! I call my dentist and let Kathy know that I have been adulting and I am pumped to announce that as of October 1 I will have my own new dental insurance! She gives me a metaphorical high five. Again, she’s known me since I was 10.

The Moral of the Story

Adulting is hard work.

Beware pyramid schemes that want you to commit to costs and promises without bonafide science. Do your research. It may take a minute but knowing what people are trying to get you into, whether because they are honestly trying to help or because they are unaware of what they are presenting you with, is crucial to making wise decisions. Picking up Link now that he is up to 100% after the battle he has unexpectedly given me was relieving, especially given how awesome the bike shop has been. That bike shop was a happy accident but I am SO GRATEFUL that it has worked out so well!

Don’t let up on doctors when they stop making contact with you. I’m looking at you, UCD. Hold them accountable for the oath they took when they began school.

Also, keep those hospitals in check. Be thorough about your bill, regardless of if it’s itemized when you see it. When doctors order tests or imagery ask questions and get things in writing, when possible. Make yourself familiar with your health insurance policy and its limitations and expectations. Do your due diligence when you’re after answers. Take notes, record that names of the people you speak to. And keep track of phone numbers you’re given.

Guys, if it sounds like a full time job, that’s because it IS. I can’t tell you how often I’ve had to bow out of tutoring sessions for school for five minutes, take calls while in the car and someone else is driving. If you know you’ve got adulting drama coming I suggest you keep a pencil and paper with you for notes at all times. I think the only things I haven’t interrupted are classes and doctor appointments. It’s a commitment, for sure.

And please, have your own back when it comes to insurance. Check out your options, compare them to your needs, and make wise choices. This is something I’m going to have to do next week when I explore health insurance opportunities. As per usual, I’ll keep you updated!

Surviving Susac,

Aurora

[survivingsusac]

Here we are with Link at Disneyland! It goes with the *novel* I posted, haha.

[survivingsusac]

Link, my Alinker

ALINKER!

Well, you guys did it! You helped me fundraise enough to order my very own Alinker! If you recall, I learned about this mobility aid through Selma Blair’s transparency about her fight with her own autoimmune disease, Multiple Sclerosis. She and I like the same things about it: It provides a way to move about when your body just won’t. Do. It. On. Its. Own. The height keeps you just about your normal walking height. Trust me, I spent most of my life as a person who was of normal physical ability and then spent quite a while being pushed around in a transport chair after a disabling disease kicked in. Being the height of peoples faces (like when standing) instead of their butts (like when in a transport chair) is MUCH. APPRECIATED. Because an Alinker is directed and moved by me to where I want it to take me instead of requiring another person to move it when they are available, it gives me drastically more independence than the transport chair did. No knocks against you, transport chair, you did me a solid when I needed you. I just am moving on to Alinker. I’ve been calling him Link. So what’s it like to use Link, you ask? Well pull up a chair, grab a drink or a snack and I will tell you a story.

Alinker Assemble

So Link shows up in a box that my daughter, Abigail, immediately claimed as her new playhouse. It was a big box. I assemble him according to the instructions and complete the warranty activation forms online. Link’s looking spiffy and I’m dying to try him out so I pump up his tires and Ab and I go for a little walk. I’m juiced and I love Link right away. I adjust the saddle (that’s the seat portion that your butt is on) height because I am short, and the placement to be right for my weight.

The State Fair

My mom/rock, Ab, and I use Link at the state fair, where he draws attention and admiration from security guards, strangers, and friends we ran into. Every now and then I caught a teen saying something along the lines of ‘I wanna ride one of those things!’ or ‘Where can I rent that?’ People in wheel chairs were fascinated and one county display attendant explained how the Alinker would be helpful to her on days when her fibromyalgia renders her body useless. She wrote down the Web site. It is so helpful that the Web site is just ON the Alinker! I noticed that by the end of the day the saddle was making my bum bleed from the semi-firm cushion rubbing my flesh raw and that one of my legs was scratched on the inside from frequent contact with the frame. I made a mental note: ask the Alinker help desk how to avoid that and/or get a replacement saddle. Once home I asked the Alinker folks my question and got instructions for optimal saddle positioning. I made the adjustment and tried it out. I could feel the difference.

Disneyland

My family and I took Link with us to Disneyland so we could all survive a day at the park. Me so I could play without being exhausted. My mom so she could play without her hands and other parts of her body aching from pushing me in a transport chair around the park, and Ab just cuz Disneyland makes her happy. Period. And she wanted me to be there with her via Link. Like at the state fair, the Disneyland security team was enamored with the Alinker and wanted to know all about it and how long I had had it. They labeled it with this blue tag f officialness so that other park security people would know that it was already approved to be used in the park. I even had a couple of the original security guards see me on later days entering the park and come up to me to talk about it some more. Then we get in the park. That’s when things took a turn for the worse. Turns out the turn radius on Link is much too wide for the line cues at Disneyland. You know the zig-zaggy switch back type turns and folds the lines make? Yeah, Link doesn’t do well with those. I learned this when I took him with me through the line for the Smugglers Run at Galaxy’s Edge. There was a lot of back and forth happening to make turns. After that experience Link was parked in stroller areas and I just walked the line cues without him. And guys, look, I know it’s described as a walking bike. I got SO tired of people telling me ‘sweet bike,’ ‘I like your bike,’ ‘how much was your bike?’ ‘Did the park give that bike to you when you got here?’ It’s a mobility aid bro. Not just a bike. I need it to live with a decent quality of life. I may just make a shirt or sign that says “Alinker: Not Just A Bike” and wear it when I use Link.

Flat Tire

It was the morning of our third day at the park, which was technically Link’s fourth day out in the world because he had spent a day at the state fair. We get back from breakfast and I hop on Link and my mom says something like, ‘How pumped is the back tire supposed to be?’ Long story short, it was flat. I stop by the wheel chair station and fill the tire with air according to the instructions (which I had brought with me because I try to be a responsible adult). The back tire then goes flat within five seconds. It’s got to be the tire tube we say. The tube must be shot for it to go slat like that so quickly. Something my mom said after the cue turn radius and the flat tire had culminated, “The Alinker is not for family outings.” It was said in frustration and I feel, is not true, but I see where she was coming from at that time. I also see how to avoid that sort of frustration in the future. We fly home later that day. I contact Alinker to share what happened and ask for a copy of the warranty that I activated. I receive it and tires aren’t covered. So I pop on over to my local bike shop.

Bike Shop

Five stars for the local bike shop. They measure and order Link a replacement tube. When the tube arrives turns out it’s the wrong one because of how the inflation valve lines up with the frame. So they patch and reinstall the ruined original tube for me to use until the correct one is shipped and arrives. The guys said they caused the delay, so they won’t charge me for it. They also didn’t charge me for installing the new saddle I had ordered. Which is excellent, BTW. Nose free saddle so no flesh being rubbed raw, my hips sit wider apart than on the original one so my inner leg doesn’t get scratched by the frame any more, and it’s memory foam so it’s nice and squishy comfortable. They did this for me at no charge, too. They also ordered the right tire tube, and gave me a call today saying that it had arrived and I can get it switched out so Link will be up to 100%. For this second surgery I am going to insist on paying them.

Reflection

So circling back to when Link arrived and I assembled him, a hand pump for the tire and a replacement tire tub for a front tire came with him. I think it may be wise for Alinker to offer replacement tire tubes for sale on their site, especially considering that that smaller rear tire is an atypical size tube with a valve that needs to be at a specific angle so it doesn’t conflict with other parts of the Alinker structure. That last sentence is pretty much just me parroting what the bike guys told me about the tire tube, I honestly have no extensive personal knowledge about tires or their tubes. I give Link the Alinker a huge high five and a hug for being the mobility aid that he is, I give Alinker the company a firm, vigorous hand shake and a smile for being professional and prompt in their responses to my many queries, but also a disappointed shake of my head for providing a warranty that doesn’t seem to serve a purpose when the product arrived with what appears to have been a defective tire tube. I mean, come on Link. You walk with me for three days and on the fourth day your back foot is broken!? Puh-lease. Five stars to my local bike shop though, they are coming through big time for me. Will try to update after Links second surgery this weekend!