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

When You Just Can’t

THERE WILL BE A TRIGGER WARNING ABOUT 1000 WORDS IN. PLEASE, IF TALK OF SELF HARM OR OTHER RELATED BEHAVIORS TRIGGERS YOU, DISCONTINUE THE READING AT THAT POINT. THANK YOU AND KIND THOUGHTS ❤ 

Today I’m somehow depressed, but more positive. I don’t know if that makes any sense. The best way I can describe it is chemical versus rational. Chemically I’m out of whack, but that makes sense. I haven’t been taking in a ton of calories, which led to me almost getting a period. Let me explain…

Your average female who menstruates, thinks that underrating results in losing your period…and it does. There is also a reverse mechanism though. TMI alert…I have an IUD. When I first got it I was not pleased, I basically spotted for a month, had terrible cramps, and wanted to punch my gynecologist in the face. (For starters, he gave me a generic version of Mirena only approved for 3 years, not 5, but told me he was putting in Mirena. It was super fun finding out that I got something else after it had been inserted. (Bonus points for the fact that he had opened my cervix, realized he forgot something, and had to open my cervix a second time. Don’t worry, he’s not my doctor anymore.) After a month though, my periods stopped.

This was 2.5 years ago. Since then I haven’t really had a period, which given my brutal periods, was a good thing. When I started getting really sick, right before starting Cytoxan, I hemorrhaged. I brushed it off as a really bad sudden period, but when it happened a few more times, I went into my gynecologist. At this point in time I was around 120 pounds, and I’m 5’10”. I went in, and the first thing my gynecologist told me was that I had lost weight and I looked good.

I was so malnourished at this point, my hair was falling out, I was growing white fuzz on my body, and I was literally incapable of warming my feet and hands. I looked like I was dying, and I felt like I was dying, and yet this doctor had the nerve to say I looked good. What the…

As we have established, he’s not my doctor anymore. What he told me made sense though. I can’t have estrogen containing birth control because of a family history of blood clots. With my one artery being potential impacted by Behcet’s, there was also an increased worry over whether or not I was personally at additional risk from the Behcet’s. I was informed that my body was suddenly producing extra estrogen in an attempt to instigate hunger, because I wasn’t taking in enough calories. These bursts of estrogen were causing intense bleeding. Fair enough, but still aggravating. Plus…if I looked so great, why was my body willing to risk bleeding like that in order to cause hunger pangs?

I really should have reported him. We all have different preferences and visions of beauty, but as a medical professional your focus should be making sure your patient is healthy. I had lost a significant amount of weight, and was no longer at a safe weight for my height. Perhaps my slender frame was normal in his life, but it was something that warranted investigation as my physician. 

I’m lucky right now. My doctors noted the 30 pounds I lost, because while it was fine to lose it, and while I’m still in a healthy weight range, and could even lose more weight, the quickness with which that weight came off was NOT healthy. 30 pounds in 30 days is not a goal.

So tomorrow my wheelchair comes. Today I did nothing. Every time I stood up, I got shooting pains in my head, neck, and lower back. They have never found the source, and have suggested dehydration each and every time. Given that I haven’t gotten my infusions in a while, that’s 110% true. I am dehydrated. Still, these headaches and related back pains, just murder me in terms of movement. I’ve also just been weak. As embarrassed as I am by the thought of the chair, I know that I’ll be able to go get things for myself again, decreasing days like this were I’m struggling. (I can’t afford delivery of groceries right now, and I can’t tolerate water no matter how hard I try.) I wanted to go see people today, but I was stuck inside. I struggled to even take my dog out. Thankfully my roommate took him out just now so I don’t have to attempt to navigate the streets tonight.

Chronic illness is a lot of fighting, but it’s a lot of acceptance, too. When I started the signs of bleeding today, I faced the fact that, even though I wanted fries, one sleeve of fries and two pieces of toast in an entire day, is just not enough to live on. I forced myself to eat maple syrup today even though I desperately didn’t want it, because I knew it was calorie dense, and liquid. I put it on toast as a sort of pseudo french toast.

Again, it wasn’t good, and I don’t recommend it as a fun treat. It did what it needed to do, and that was the point. Gastroparesis changes how you see food. It’s fuel, but it’s also something you kind of chase impulsively. If I know something won’t make me vomit, or writhe around in horrid pain, I’m going to eat it. 

My failure to get out and do anything today, the pain, the fatigue, the anxiety over the chair, I logically worked through each thing…but my brain chemistry felt like it still need to give me a little shove via depression. I have depression and anxiety because of my PTSD, but I suffer because of the major depression from my Keppra. How do I know? The symptoms are so different. With things relating to my PTSD, talk therapy, thinking through the situation, finding routines, they all help with the symptoms. Plus the symptoms are less life limiting. Sure, I’m startled easily, hyper vigilant, and can’t handle some situations, but I’ve come a long way via cognitive behavioral therapy, and conventional talk therapy.

Major depressive disorder doesn’t care how much you talk…

Trigger Warning: Below there is talk of self harm and suicide. If you are triggered by discussion of this subject please discontinue reading this blog. If you or someone you know is thinking of suicide, please call, text or message, the suicide hotline (in the United States. I apologize as I don’t have information in other countries. I do believe 999 is emergency services in the UK, and 000 is Australia.)

Suicide Hotline: Call 1-800-273-8255, Available 24 hours everyday, there website is https://suicidepreventionlifeline.org

 

______________

One thing my major depressive disorder causes, that my PTSD and related anxiety/depression never caused, is really obsessive suicidal and self-harm thoughts. I have had thoughts of both in the past as a result of my PTSD, and medication decreased those thoughts, but they were never as intense as they are with the major depressive disorder. I will become immobile, just stuck in bed. Then I’ll drag myself to the shower, and just climb in wearing my clothes. I would look around and just see items I could hurt myself with, or even kill myself with. Living 24 floors up when your meds aren’t sorted out, is a real test of self-control. Thankfully I talked with my doctors, and we began a treatment plan.

Today was just one of those weird days where the meds worked, but not well enough. I felt worthless all day. Financial struggles caused me anxiety, but the inability to socialize was the worst. I’m generally okay with being introverted, but when my medical issues make it impossible for me to go out, it creates a small crack for the botched chemistry to spill out of. There is something so bizarre about feeling utterly worthless, feeling like you should just run into the woods and never talk to anyone again, but also recognizing the irrationality of that thought process.

Thank you biochemistry for the gloriously f*cked up mess, that is my brain on Keppra.

To be totally fair it wasn’t normal before the anticonvulsant came into my life, but it was manageable without medication. I am not embarrassed that I need medication to keep myself safe. There was a time when I was ashamed of my thoughts. I didn’t want anyone knowing how violent and real they were. Now I realize the importance of recognizing the severity of that thought process, and the need to ask for help.

Chronic illness warriors, spoonies, sick people, whatever label those of us choose to use, tend not to be folks who really love asking for help. We’ve been in the hospital. We’ve had to call nurses every single time we had to go to the bathroom. We’ve eaten bad hospital food. We’ve gone through painful procedures.

We are conditioned to prove our independence…so if we ask for help, we probably need it badly.

That was today. I don’t feel well, but I’m also oddly at peace with it in a rational sense. I can tell you why my stomach is messed up. I can tell you why my asthma is flaring. I can’t tell you what this headache combination is, but I can tell you that it’s probably related to the fact I haven’t had enough to drink today. Now I’m going to take a nice bath since last night’s bath was ruined by a lack of hot water.

If you are reading this, and you’re realizing that you have a logical side of your brain that shouts over that illogical biochemistry induced portion, I’m sending you a gentle hug via our phone/tablet/computer/whatever. You’re not alone. Focus on that little rational voice shooting from the back, it’ll guide you on the right path. 

When You Just Can’t

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)

So Much Sleep

Every single doctor wants to put me on a steroid taper. I was just on a steroid taper. The issue is that the dose of steroids I need to feel relief, is a whole lot higher than what one can maintain long term. The other issue is that it’s just a stop gap measure. We can keep decreasing flare symptoms for a few days at a time, but we aren’t really doing anything for me overall.

Tomorrow I’ll be calling my rheumatologist, but she’s pretty set on me waiting until January to move forward with IVIG. One of the biggest struggles lately has been how much I’m sleeping! Literally fell asleep in the bathroom because I thought I was going to throw up, didn’t, and ended up waking up on the floor. (Now that I’m thinking about it, my jaw hurts, so it is possible I fainted.) Still, I literally slept for at least 12 hours last night. I got up, made it to the couch, and somehow fell asleep again for a couple of hours. Walked my friend’s foster dog, hung out with the friend for a bit, then somehow managed to fall asleep again. Not sure for how long, at least an hour, maybe longer, but my friend woke me up and asked if I was okay.

My memory has been horrid, and I want to watch shows, but I keep falling asleep. At this point I just put things on that I’ve seen before.

One amusing result was me spending several hours convinced my phone was broken. I kept lowering the volume, and was convinced it would stop just before going to mute. I reset my phone. I updated everything. Then I remembered, to put it on mute, I had to use the little toggle button on the side.

I mute my phone regularly…but today, I forgot how to mute my phone. 

While a lot of people would find this alarming, I just a accept it for what it is. I am in a flare, and all my symptoms are heightened because of it. New symptoms are related to old symptoms, and even fully new symptoms seem to be minor compared to established symptoms.

If you have a chronic illness, and you need more sleep than usual, talk to your doctor, and then sleep! 

For a long time I had a lot of shame about how much sleep I needed just to barely function, but now I (for the most part) accept it. Yes, there are days when it aggravates me, but right now I’m just embracing it. Normally my nebulizer would make me jittery, but it didn’t, so that makes me happy! I also don’t explain it to people, at least not in an apologetic way. My automatic response to, “Are you okay,” has become to just say that I am, or even ask why they’re asking. I don’t even think twice because I’ve just accepted how things are…for now.

I will not give up hope. I will have a better quality of life. Maybe I’ll never be in remission, but I will achieve things in this life.

You have a purpose, even if you’re ill…you just have to find it. I’m still digging around for mine, but I will find it. Right now I’m just trying to share my story, and make people who struggle with their illnesses, hopeful.

So Much Sleep

Inhale, Inhaler, Asthma, Weed?!

Disclaimer: The information below is not meant to be medical advice. What works for me, is what works for me. You should consult your physician to get information and guidance on what would be best for you and your situation.      

_______________________________copingwithbehcets________________________________________                       

I’ve gotten a lot of judgment for my use of medical marijuana, so I thought a formal blog addressing it would be a good idea. Today I was reminded that I should address it, because I had to use my nebulizer for a severe breathing attack. I was using the carpet cleaner to clean up my roommate’s dog’s urine. (She has what I like to call “on purposes” because she doesn’t accidentally pee…she just pees.) Anyhow, the spot was quite saturated, and as I got it clean, I started coughing. Really coughing…and then the thick mucous came up.

Have you ever coughed so hard you can’t inhale? You’re coughing and coughing until your body decided maybe vomiting would be easier.

Luckily I didn’t vomit, but it was close. I spent some time on the bathroom floor recovering, but still couldn’t breathe well. I dragged my nebulizer to my room, hooked it up, and instigated the opening of the airways. This meant more coughing, more spitting things up, but ultimately finding oxygen.

Then the steroid jitters kicked in.

The good news was that I was able to finish some of my homework. The bad news was that the shakes continued until the nausea became unbearable. I took the last Zofran tablet in my possession, crossed my fingers that I could get a refill ASASP, and waited for it to kick in.

The thing about severe nausea, especially gastroparesis related nausea, is that staying still and trying not to think about it, doesn’t make it get better. The discomfort grows and grows. 

In the ER I’d beg for IV Zofran immediately…but at home, I don’t have that option. When I hit that wall where I know I can’t go more than a few more moments without vomiting, I reach for the marijuana.

But you said you had asthma?!?!

Yes, I do have breathing difficulties. Perhaps smoking marijuana isn’t the best thing in that situation…but all medications have side effects. First and foremost, I don’t smoke marijuana. It is too harsh, and always causes me to need my inhaler. In a pinch I’ll have someone shotgun me some, but it isn’t the preferred method. I use a vape.

I use a high end vape.

Truth be told, I need to replace the screen, but the biggest thing is that I control the heat, and the filtration is amazing. Within a few minutes my nausea is gone, and I don’t cough, choke, or need to use my inhaler. My doctors who are okay with medical marijuana, are okay with my methodology, though they would prefer I use edibles. The issue with edibles for me, is the same as the Zofran situation. I need the drug to work fast. Plus my digestive system is slow and inefficient in general.

They do sell  ODT Zofran that does act faster, because it dissolves under your tongue.

The reason I don’t use the ODT option is personal, so please don’t assume you’ll have the same issue that I have. Since I am generally dehydrated, my mouth is almost always dry. This isn’t related to vaping marijuana. Even if I haven’t vaped in days, my mouth is like cotton. The ODT therefore takes forever to dissolve. I also can’t tolerate the taste. Most people find it pleasant, but when I’m in a position where I’m going to vomit, the only thing I can tolerate is the taste of peppermint. Usually I pop an Altoid, or put peppermint oil on my lip, after vaping. I really can’t taste anything else when I’m at that level of nausea.

If I had a port, I would smoke a lot less marijuana. I have a nothing against people who use it medically or recreationally. Prior to using it myself, I thought it was stupid, and while I do know folks who have faked medical conditions to get their medical marijuana card, I also have seen folks like myself who do really need it. For the first time in a long time, I learned what it was like to go out, and not have to worry about nausea taking over my evening. If I use the right strain, I can conquer my stomach, and drink water, or work on homework. At the moment the strain I have was cheap, but insanely strong. It works, but it is making me just a bit too relaxed to focus on anything remotely complicated.

So yes, I have asthma, and I use marijuana. I am in no way endorsing this practice, or saying that you should vape if you have marijuana. My current situation makes medicating me difficult. There is no option for my gastroparesis. There is also no real option for my Behcet’s, though we may attempt IVIG. Right now I’m just popping mycophenalate like it’s candy, even though I could never eat actually candy without getting seriously ill.

Inhale, Inhaler, Asthma, Weed?!