A Sick Chick’s Thoughts on the Amazon Boycott

It was Prime Day, the summers answer for Cyber Monday or Black Friday, but of course, it’s all on Amazon. Whether it’s being pissed off that the site was frequently down, or that the deals weren’t what you wanted, it’s a guarantee that someone somewhere is upset. There were definitely valid concerns behind the call for a boycott, including how Amazon hurts smaller bookstores and a lot of authors. There were also valid concerns over how the company treats warehouse workers.

So did I boycott? No. 

Yes, I’ve had jobs that sucked, involved tedious work, with a ton of standing, and I’ve had break rooms that are as far away as my break itself is. I also miss seeing little bookshops around town. Whenever I can, I do choose to shop in store for  books. I also tend to read a lot of smaller authors, who may have a series or two, but aren’t always super well known. Sometimes they are, but if the book series is 10 books long, and those books are FREE on Kindle, I’m going to read for free. I will, however, try and buy the first or second book (depending on if there is a sample or not for me to judge how far I’ll get into the series.) The book I buy, I often end up giving away. This ends up not always benefiting the author in the long haul, but hey, I tried.

I’m poor.

I can’t afford to buy every book I read, even digitally, so when I have something like Prime Unlimited, I don’t just want free books, I need free books. If I can afford a book, I’ll buy a hard copy of it. Some books, from authors I know and love, I’ll buy the hard copy because I’ll know I’ll want to share it with someone. I have books that have been passed along so often, I wouldn’t be surprised if one came unexpectedly back some day.

I’m Disabled 

Amazon in general, makes my life possible. I’ll have my roommate get some groceries for me when he’s out, but I prefer to be as independent as I can be. The best way to get groceries right now, for me, is to order them through Prime Now. I have stores to choose from, but Amazon tends to have the best prices. Other items I may need, are also often procured via Amazon. When the world begins to strip abilities from you, you cope. I do hope they come up with a way to make their warehouse employees happier, but I also recognize that a lot of warehouse jobs are just difficult. It’s repetitive, manual labor. There are things that Amazon can do to make these employees’ lives better, and we should find a way to hold them accountable for their actions.

But don’t HATE me. 

Friends were upset when they found out I shopped on Prime Day, but there were a few things I already needed, and they were on sale, so of course I shopped. Many more are still boycotting Amazon, and are irritated that I won’t. I’m writing this, and then I’m placing an order for melatonin. It has been far too hot for me to even use my wheelchair to get to the store and buy things, even little things. I am not a cold human being. I understand that the employees are unhappy, and that a giant company is squashing smaller business through just sheer domination of the market. I also understand that I have needs as a human that this giant dominant entity is capable of providing me with

You do you. Boycotts are great, and walk outs are great, too. Attempting to unionize, pushing for certain legislation, all good ways to make a statement. Just don’t come down too hard on the people who opt not to participate. Some of us need companies like Amazon, because we aren’t physically capable of getting through our sick people lives without them.

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A Sick Chick’s Thoughts on the Amazon Boycott

I Have a Cold…and I Love It

Okay, I know that seems odd, but there is a reason I’m in love with the fact that I have a pretty nasty cold. In the past couple of years, when I would get a virus, I would get a flare. The flare would inevitably be worse than the virus. Prior to IVIG, I had a headache, and I just shrugged it off. Behcet’s and headaches are just hand in hand for me. Then after IVIG I had what I classify as an IVIG headache. I felt just, well, sh*tty for a couple of days. That is normal, from what I’ve read. Even if the rheumatologist’s temporary coverage felt as though I should have made some miraculous turn around, I knew from what I’ve read, and what I’ve heard first hand from other patients, that it would take some time.

Then I realized I had a cold.

I was sleeping a lot, had a little fever, and attributed it all to the IVIG. Except, the sleeping eased up, as did the headache, and my nose was bleeding and stuffy. I blamed the weather. I had a migraine, which happens to me when the weather shifts. I blamed a lot of stuff because I didn’t want to believe the IVIG wasn’t working. This morning, it dawned on me. I have a cold. I have a gross cold, and my gastroparesis is acting up because my appetite came back, and I overate.

Folks, my appetite came back. 

I haven’t been hungry in months, and suddenly having that drive to eat again was so bizarre. I will always have gastroparesis, my celiac artery is blocked, and it can’t be opened. I also have a history of GI issues that just bogs the system down…but my intestines are moving again which is the main reason (I feel) that I wasn’t hungry. For me the delayed stomach emptying causes gastritis, acid reflux, and bloating/pain. The lower GI ulcers kill my appetite, cause pain and bleeding, and just generally make me miserable. That seems to be tied in more closely with the Behcet’s.

Beware: I’m about to discuss poop.

I have been pooping. Not as often as “normal” folks, but I am pooping. Prior to IVIG I was going 10-14 days between bowel movements, and those movements were pathetic. Nausea, pain, blacking out, just total brutality, for the smallest bowel movement. Doctors often accused me of “pushing too hard,” but I never pushed. Why push when there isn’t anything causing any urge to push? Lately I’ve been panicking when the urge to go hits me. It sort of comes out of nowhere, and is like, “YOU HAVE TO GO NOW!” Of course, it isn’t that dire. (Except when I ate a gummy edible containing gluten. I got horrendously sick, pooped my pants, and couldn’t figure out why. Later it dawned on me that gummy candy often contains gluten, so I checked, and yup, the edible was the culprit.)

My point is actually pooping is weird, and it shouldn’t be, but it is. I am torn between excitement and nausea. I’ve tried explaining it to healthy friends, but only a similarly GI sick friend understands it. When you just don’t go to the bathroom often, your body can’t really handle the sensation. My nervous system is so used to not feeling anything positive from my gut, that even a normal bowel movement is misinterpreted (at least that’s how it feels.) Hopefully with time I can get used to them again, and hopefully they remain consistent. Even going just 1-2 times a week is an improvement right now.

I have to talk to my rheumatologist about putting in an order for a port, even though I know she will fight me on it. The reality is that I’m existing in a state of malnourishment, or dehydration. The only reason I’m not currently losing weight is that I stay on top of calories, and my thyroid gave up working. It isn’t a healthy way to prevent weight loss, and I’m still losing loads of muscle. I can’t do my infusions 2x per week for fluids and vitamins, unless it isn’t an IVIG week. Even the week after IVIG is dodgy, since they have to use two different veins for IVIG (unless I go home with the IV in place. This is something I’m not comfortable with because of issues with phlebitis and clotting. I just don’t personally feel it is a good fit for me. I’m also sure my dogs would find a way to hurt it.)

The other issue I’ve run into, emotionally, is the expectation others have that I’ll be miraculously healed by IVIG. IVIG is a treatment protocol, it isn’t a cure. There may be a day when I can go off of it and be in remission, but going off of it is risky. With neurological issues involved, it just isn’t something I’m overly in a rush to test out. Some people spent their lives on IVIG. I will need medications for nausea, I will need IVIG, I will need my wheelchair at times (though hopefully less as time goes on). The damage done to my autonomic nervous system isn’t all fixable, in fact, some issues will definitely remain, and that is okay.

IVIG wasn’t about a cure. It was about survival.

I have a tendency to downplay the seriousness of symptoms when talking with friends and family. It’s something my family has a tendency to do. There are issues we still need to address with me cardiovascular wise that I put on the back burner. They’re likely related to the autonomic stuff, but we just won’t know until we look into it. The biggest question mark is the swing in my heart rate. I have some serious bradycardia sometimes, and it is sort of terrifying. I don’t think about it unless I’m on a heart monitor, and I’m setting it off, but it’s taxing on your heart to get super low, and then go back to normal or even into tachycardia. Again, I’m hoping IVIG fixes things by stopping the onslaught against my autonomic nervous system.

I Have a Cold…and I Love It

Reflections and Fevers and Dehydration (oh my)

This staph infection sucks in a bizarre way. It’s relatively healed but of course I need to keep taking antibiotics. I won’t finish the full course, and I never do. My doctors are okay with it at this point given how horrendously they impact my body. I wasn’t able to go get blood work done today because the man delivering my wheelchair had a fever, so he moved my appointment to Wednesday. I need the chair to get to the lab, therefore, no blood work.

In any event, the blood work is for the allergist, and until that is done, antibiotics and I are still not on great terms. Of course, infections and I don’t get along so well either. He had explained that my body may be hypersensitive in general, and any infection, certain drugs, and certain foods and drinks, can all trigger allergic type responses. The idea makes total sense to me, given that I’ve told nurses for years, “I’m allergic to nothing and everything,” to explain random bouts of hives. It just sucks that Tylenol does nothing for any of my pain, and is now the only acceptable pain reliever per the allergies.

Yes, the doctors did okay the discontinuation of antibiotics early, if my symptoms had resolved. No, I’m not lying.

There is a valid reason for this aside from the allergy issue…antibiotics just make me really really sick. I’ve had suspected C. diff on more than one occasion, and after weeks of constipation, I am officially no longer backed up, courtesy of the Keflex. Of course any antibiotic can cause diarrhea. They treated me for C. diff once, without culturing me, and it resolved, but I hadn’t finished those antibiotics either due to an allergic reaction. Why not get tested to see if it’s hanging out in my gut? First off, you have to have diarrhea to have the test done. (You can only provide a liquid sample. No solids at all or the test can’t be done.) Secondly, I don’t want to be put into isolation for-freaking-ever.

I’m not explaining to anyone who ever visits me in the hospital, that I’m in a gown and whatnot room, because I’ve got C. diff just hanging out in my bum. 

Yes, I know it isn’t that dramatic, but please. I have so much going on, I don’t need that added to it. The antibiotics have somehow increased my bowel movements, but decreased my appetite. I think the low grade fever and nausea is probably to blame. As much as I need the wheelchair as soon as possible, I’m also dreading it. There is something about a power chair, that for me, seems so much more dire. I see someone in a manual chair, even if it has some sort of power assist, and I figure they’re okay. I see the power chair, and my mind just goes straight to sickly things. I feel weird that testing showed that as the best option, even though I know with my hyperactive reflexes and ataxia that it makes sense. I guess I’m just insecure.

Now to go and walk the dogs with a fever, the shakes, and dehydration. I did manage to drink some of a cherry slush, and eat some tots to provide my body with some needed salt, but I simply don’t feel like waiting for an elevator and going down 24 floors. This move can’t come soon enough. The idea of being just 2 floors up, and better yet, not being in a city with the rats, cockroaches, and hepatitis A outbreak. The rat realization was new, and while I love them as pets, the ones that live on the streets definitely harbor disease. It’ll be nice removing that element from my daily struggle.

It’s hard explaining to people who think you look like you’re doing well, just how much effort it takes to put on that facade.

Reflections and Fevers and Dehydration (oh my)

Wheelchair Waiting

In my brain there is a list of things I have to get done. In my body there is a list of system failures that prevent me from doing the things I need to do. Us sick folks tend to triage our lives, but not all of us are aware that we’re even doing it. I put school, the dogs, and anyone who needs me, first. My social life has died a slow death over the last few years. It started with a bad relationship, then my illnesses slowly but surely made it harder and harder to socialize.

When my falling and fatigue became really bad, and the doctors started discussing mobility assistance beyond my walker, I was angry. I didn’t want to be “the girl in a wheelchair.” I also didn’t want to have to explain to people why I was in a wheelchair when I could walk. I used to take my dog down to the waterfront, and back. It was a 20-30 minute walk each way, and now I can’t go more than a block. Some days a block requires 2-3 breaks to complete.

Did I want mobility or anonymity? I could either be the girl who takes her dog to the waterfront, or someone nobody knows, because I don’t bother to leave the house. 

Today I’ve made peace with it, even with people who may ask why I have it. I know people and places that I used to commute to on foot. Now I’m waiting for the free ride system to come around, or I’m paying for ride sharing apps. I’d much rather explain that I traversed the distance in my chair, so that I could do something like go to a movie, and walk the mall afterwards, or even go putt putt golfing. There will still be days when I simply don’t have the energy to do anything, but at least with the chair I would be saving energy as often as possible.

I keep thinking about my thesis course that starts in a month. I’ll have to be on campus once per week for 2+ months. Once I have the chair, I’m not worried about it. As it stands right now, I am worried. Walking to and from the bus stop, is a challenge. The last time I did it, I started to pass out during class, and had to leave early. The chair, as constraining as it may seem, actually gives me more freedom.

Today that’s all I can think about. I want to go see a movie, but I simply can’t muster up the energy. The plan is to go see it tomorrow after I get my vitamin infusions. (Barring of course, any major allergic reactions!) I still can’t wait for IVIG, either. I hate throwing all of my hope on one treatment option, but it’s really all we have left, so it’s what I would like to start doing as soon as we can.

Head up.

Chin up.

Positivity.

Wheelchair Waiting

I’ve Always Wanted Fuller Lips…But Not Quite Like This

After a few days of stress, and feeling like garbage, I was pleasantly surprised to be feeling pretty good after taking a couple of naps. Everything was going fine, until my lip started to tingle. I was annoyed when the tingly feeling shifted to a burning. Investigation showed some redness, and by then my lip was basically numb. I nonchalantly mentioned that I thought I was getting some oral ulcers, before asking if my lip appeared swollen.

Within five minutes I went from how I usually look, to having a pretty seriously swollen top lip, numbness in both lips, numbness up my nose, and some selling in my cheek. Even my tongue was numb in parts, and my hard palate was almost totally numb.

It has happened before, but I just assumed it was related to the Flagyl I’d been on at the time. Now I have to wonder if there was something else at play. After an extraordinary high dose of Benadryl, things settled down a bit. My lip was (and still is) sore, as are parts of my lower lip, and tongue. I did have some increased swelling again this morning, so I took more Benadryl. My primary care doctor is phoning in an Epi-Pen just in case, and I have an allergist appointment on the 5th of February.

I laughed it off, but the person I was with at the time was slightly less amused. With how quickly the swelling came on, and spread, he had legitimately worried that he’d have to rush me to an ER, or even call an ambulance. I can look at the situation logically, and appreciate his fears. Looking back on it, I’m lucky. The numbness moving down the roof of my mouth, into my gums, and even parts of my face? That’s serious. If it had moved down my throat, and I’d lost the ability to breathe, it could have been deadly.

For years I was told I didn’t have nice lips. (I have perfectly normal lips, just for general information.) When I’ve had instances where my lips tingle or even puff up a little, I just chalk it up to blow flow, and feel grateful. It took this level of severity, to realize the periodic episodes of hives without a cause, and now this, are definitely a sign that my system is not in synch.

My theory is twofold. The first scenario is that my immune system is screaming intruder as though an allergen is present. The result is a flurry of histamine and other responses, leading to hives and/or swelling. The second scenario is that I’m actually having angioedema, and not an allergic type reaction. There have been a lot of cases in which someone has an autoimmune disease along with angioedema or mast cell activation syndrome (MCAS). I don’t think it would be MCAS, as I don’t have (at least not yet) symptoms of anaphylaxis. What I do have, are these episodes where it seems as though the blood vessels in my lips, mouth, and perhaps cheeks, all want to allow the area to expand.

I can’t know, of course, and I doubt doctors will have an easy answer. I will presumably be getting allergy testing done, but with the gastroparesis, I’m not expecting a huge change in my diet. It would be nice to know for sure what I should avoid, and extra nice to know if I am truly allergic to several medications, or if my body was just going rogue because I was ill.

Alas, I can save money on lip injections, but I won’t know for sure which areas will be plump, and I won’t know how long the plumpness will last. (Let’s not forget the lisp, either!)

We joke, and we laugh, because we’re alive.

I’ve Always Wanted Fuller Lips…But Not Quite Like This

Very Hard Day

I am an emotional eater, which would be fine if it weren’t for gastroparesis. Last night there were a few things that frazzled me, on top of it already being a busy night because of New Year’s Eve. NYE is my favorite holiday, and between some random events, and fighting off a cold, I’ve been left paying for it. I took a two hour nap, and I’m legitimately contemplating going to bed right now…it isn’t even 7pm.

Chronic illness takes a lot out of you, so when something happens that would leave a “normal” person tired, it can leave a chronically ill person super exhausted. Today it hurts to even move. I can’t imagine doing anything other than sleeping. I’m hoping my roommate takes my dog out…and I ate too much. The nausea and pain are definitely not enjoyable, but at least some of what I ate had nutrition I needed, namely protein.

This is one of those situations where I want to conquer the world, but I know I have to just relax and allow my body a chance to recover. Despite my seizure medications, I’ve had several moments where I thought I was about to have a seizure today. It’s worrisome. I’m hoping I don’t because I don’t want to deal with it. I know I should be more concerned about how a seizure impacts my body and brain, but I know all of that. My main concern is just not wanting to deal with my roommate being worried, potentially dealing with EMS, and even ending up in the ER.

I keep telling myself it’s okay to take a day to just recover, but I also want to conquer today because I swore I’d be a fighter in 2018, Of course, knowing when to relax is part of being a fighter…

Perhaps a shower will help things. It may just put me to sleep, but that isn’t the worst outcome. I don’t nap, so if I do, it’s usually a sign my body really needs the rest. I didn’t go to bed until around 4:30am, and I’d taken sleeping medication far earlier. That means the drugs wore off and I was left attempting to fend for myself and sleep naturally. I can only sleep in short spurts, hence the naps today.

I am not a quitter if I take a day off from being positive. I know that, and I have to embrace that. I didn’t have a good evening. I mean I did, then I didn’t, and the chaos and emotional aspects flared up the already active flare that i’ve been in. It was the kind of thing that leaves all parts of you raw. Despite the resolution, and the rational thinking I’m so fond of, I need to allow myself the ability to be angry, and sad.

Today is not a good day physically, and it’s a rough day emotionally, so together they’re feeding on one another, creating even more aggravating physical symptoms. Acknowledging that, and sleeping when I need to sleep, is the right thing to do. It may feel like giving up, but it’s really just recharging.

I am not a quitter.

Giving up isn’t an option, but taking a time out is. So today is a time out, a moment to listen to my body, and use heating pads and hot water bottles, to treat the aches and pains. Sleeping at random hours, and for long periods, is giving my brain the chance it needs to relax. (Please note: there was a long pause after the phrase “needs to,” because I literally couldn’t figure out something other than recharge to place afterwards. Clearly I should listen and take another nap!)

Happy New Year. Listen to your body regardless of whether or not it’s a holiday. You are your body’s best advocate, so be the best you can be.

Very Hard Day

Changing Your Expectations and Being Okay with It

I have had to change so many of my expectations over the last few years, and you would think it would get less painful each time…but it doesn’t. When my ex-husband and I separated, it was a relief. It wasn’t a good marriage, despite being a long marriage, and the freedom from the constant verbal and emotional tirades was beyond amazing. My health had momentarily improved, leading me to believe that I would be so much better physically, because I had freed myself emotionally. It was partially true. My C-PTSD symptoms did decrease, to the point where my medications could be removed, but my Behcet’s didn’t get the notice.

Denial was my first mistake. I refused to accept that the symptoms I was having were Behcet’s related. Wasn’t I always uncoordinated? Didn’t I always have stomach issues? Finances were a mess because I’d blown my knee out, so the stress was of course causing me some physical distress. I made so many excuses for so many obvious signs of flaring, that I was eventually sitting in the medical marijuana office, weighing in at 120 pounds, all 5’10” of me. I got my medical license to smoke, and for the first time ever, tried marijuana. At that point I was struggling to keep down water.

My second mistake was over optimism. Let me explain this further. Being optimistic is wonderful. You need to be positive to stay on track and fight your chronic illnesses. Being overly optimistic, though, prevents you from planning realistically. I kept telling myself every treatment change would work. When it didn’t, I just kept pushing forward. I pushed my body to the limit because I was still in denial. I had a boss prior to getting sicker, who was into positive thinking so seriously, that we literally couldn’t express any negative feelings. I clung to the idea even after leaving the job.

The final mistake was combining mistakes one and two, with lying. I lied to my family. I lied to my friends. I told people I was fine, and when they saw me, they were floored by how not fine I was. By the point I was going to NYU, where they would recommend Remicade and if that didn’t work, Cytoxan, I had been hospitalized for over a week, and was barely able to walk with a walker.

Denial, overly optimistic thinking, and lying to yourself and others, is not going to help you.

I still believe there will be a day when my illness doesn’t impact me day to day, because I’ll have treatments and tools at my disposal, but I am still coming to terms with that reality. Some days I will need my wheelchair. I will likely need IVIG regularly, for quite some time, if not indefinitely. Remission is out of the question, but given how aggressive my case has been, it isn’t likely.

And that’s okay.

That may sound like over optimism again, but it isn’t. I will adjust my life as needed, and with time, I will be able to find things that I can enjoy and do with whatever my body is capable of. I don’t know if anyone will ever be able to love me enough to live with me and commit to me, and while the thought of never settling down and actually living with someone hurts, I do know that it’s a possibility. I also know that there are people out there with chronic illnesses who have found partners, so it isn’t impossible. The first step, though, is accepting myself, and my body, for what it is.

My schooling changed. My potential career paths changed. It hurts. I wanted to be a clinical laboratory scientist more than anything, and I may not be able to ever pursue that path because of my ataxia. What I have found, though, is clinical study associate positions, and they’re actually really interesting. To be honest, I should have gotten my MPH (Master’s of Public Health), but I wasn’t as sick when I committed to the forensic program. Ultimately I can still get certificates for clinical study administration, and because of my undergraduate and different graduate degree, I could make a case that I would be an excellent advisor. I’ve literally studied the lab piece of things, and the investigative side of forensics, I am the perfect person to put together official studies that pair the work that is seen, with the behind the scenes work.

I have literally discovered a career I never knew existed, and it’s in demand where I live. I can also do it in a wheelchair, and even handle some administrative tasks from home.

Currently I’m not in a position to work, but I want to be working someday, and this career field gives me hope. Regardless I love the idea. I could also look into PhD programs with my undergraduate and graduate school, because they have agreements with certain degree programs, where they pay for your PhD if you give them 5 years of your time as a professor. I would actually enjoy teaching college students, and the flexibility of the potential online classes is amazing. Even if I had to do in person instruction, the ability to do it in a wheelchair also makes it a viable option.

Mostly it’s about recognizing that I even have options.

You may not be doing what you thought you’d be doing, but very few people in their 30’s are where they thought they’d be in their teens or even early 20’s. The friends I think that have it all, don’t really all have it all. I come from a small town and most of my friends have gotten married and had kids, but there are others like myself, who got married young and then got divorced. I’m glad I didn’t have kids with my ex-husband, because we would never have been able to peacefully coparent. I also wouldn’t be able to focus on getting myself well, if I had children to look after.

I am not where I want to be, but I am still here, and I still have the opportunity to move in a variety of directions. I just need to be open to the options that I have.

Changing Your Expectations and Being Okay with It