Loving Yourself – It’s Not Easy to Learn

Backstory: I know a lot about dysfunction.

That’s pretty much the most important part of the backstory. I don’t have a real decent track record when it comes to knowing how to be loved. It’s one of those things that I see other people just instinctively know how to react to, but I never really have. I married the first guy who told me he loved me. I was 15 when he told me he loved me, and 20 when we got married. I should also mention that I blurted it out first, not thinking, but definitely meaning the words. He quickly followed up with, “I love you, too,” to which I shouted, “No!” and then dramatically burst into tears.

I told you, I’m pretty f*cked up.

After that there wasn’t another relationship where love was really even talked about. There was a guy I fell in love with who was about to say something along the lines of stepping up things with us, so I quickly sunk that ship faster than the Titanic in an iceberg storm. Nope. Wasn’t going through that hassle again. I went back to my abusive spouse, and just stuck with what I knew.

The last thing he ever told me was that nobody would ever love a sick girl like me.

I talk about it, and it’s always in a way that mentions how painful the words were, while also playing up my determination to prove the words wrong. The thing is…I don’t know if I ever will, at least not when it comes to me and romance with someone. I don’t know if anyone will want to love someone who may not be able to have children, at least not conventionally. I don’t know if anyone will want to love someone who has to rely on IVIG to stay alive. I don’t know if anyone who ever knows the extent of my disease, will be willing to take a chance on a forever with a question mark hanging over all of it. I do know I want more than anything to start chasing down bucket list items, ideally with someone who loves me as much as I love them…

Then I realized that I don’t love myself. 

It was a shockwave because I’ve always talked about my low self-esteem. Seriously. I take baths with hand towels over my stomach so I don’t have to see my livedo reticularis, or my chubby areas. Usual I try and obscure other areas I’m uncomfortable with, but I can’t because of the port. I’ve been back in San Diego for almost three years, and I’ve been to the beach a handful of times, and worn a swimsuit maybe 10 times total, but only 2 times without cover on. It’s just not something I’m comfortable with. I’ve never felt attractive, and it isn’t even a weight thing. When I’m heavy, I feel too heavy, and when I’m thin, I feel too thin. There is just this inherent wrongness that plagues me. Even when I have to do my makeup, I try and rush, and I never focus on my full face. Photos are a nightmare.

Personality wise, I know I’m a good person, but I’m not as able bodied as other good people, so I don’t feel as though I am a valuable person. That reduces my ability to love myself. Tomorrow I have nutrition, and I’m going to talk with her about how we can handle some of these things, including working with the therapist at the practice. My current diet isn’t helping, because I’m living in a constant sugar crash, or feeling like I’m going to be sick because I’ve tried the wrong combination of foods.

I need to embrace my reality, I am a spoonie, I am a sick chick, I won’t get better but I can manage better. I also need to learn to love myself despite all of this.

Maybe someone will tell me they love me, and mean it, and be there through the ups and downs, because it would be amazing to have someone to share this life of mine with.

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Loving Yourself – It’s Not Easy to Learn

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.

A Sick Chick’s Thoughts on the Amazon Boycott

Paging a Doctor…Literally Any Doctor

My new rheumatologist told me that IVIG was approve, but that they needed to find an infusion center. Fair enough…except that IVIG isn’t approved. I called my insurance to kindly point out how serious the situation was regarding IVIG, and they told me that they had nothing on file aside from my prior IVIG.

Well fuck.

I left a message for my new rheumatologist yesterday, pointing out that the neurological symptoms are coming back, which is bad. The last time it happened I was left with permanent issues. It changed the entire course of my schooling and career. Now I’m trying to focus on a thesis, when I can’t stay awake for a full hour.

Example: I just typed our instead of hour. I wish I could say that it wasn’t a common occurrence, but it is. I also don’t do super when it comes to identifying objects. I’m not in the stroke range, thankfully, but I did get to go through stroke testing because of how bad I was doing the other day. 

As if all of this weren’t enough…no IVIG on time, means I’m walking around with an inflated port. The ER doctors told me I could go to six weeks, but I was told VERY adamantly when I got the port, not to go longer than 4. With vasculitis it was suggested 3 weeks was ideal, but 4 was the maximum I could/should go. Since I was getting infusions of fluids more often, it didn’t make a huge deal, but now it kind of sucks. My hope had been to do needles during the week, giving me weekends off, but that obviously requires home nursing.

Which my insurance denied from my primary care doctor…but also hasn’t approved through my specialist. It’s cool, I’ll just have this time bomb in my chest.

My primary care doctor responded today, and I’m to go to the ER ASAP because there is a chance that the port is fully clotted by now, and  could therefore need to be removed.

Yeah, the think I juts had implanted two months ago, to make life easier, may now have to come out, because doctor’s and insurance companies can’t get on the same page.

I’m trying to be as zen about this as possible, but honestly? it really sucks. All I can do is sleep, and even that isn’t the most restful thing. I wake up nauseas, or super adrenaline filled. I fall asleep on the couch, while sitting, just however and wherever. I can feel my body giving up.

Neurologically I’m having more muscle spasms and shaking. I’m so terrified it’ll be like it was a few summers back. I don’t want to end up spending a long time in a hospital, losing total coordination, and having to rely on nurses every time I wanted to do something as simple as go to the bathroom. At UCSD I was able to convince the doctor to allow me to use the actual toilet, instead of a catheter or bed pan, as long as I had a nursing escort. Sharp isn’t that kind. Even when I can walk, they don’t feel it’s worth the risk.

Another reason it’s not a good time to go into the hospital…July = all the new doctors. Nothing like having a rare condition with a bunch of inexperienced interns. 

I really just need this port flushed, and some steroids. Some IV steroids would be stellar. The only other thing I can think of is begging my new rheumatologist to give me something to suppress my immune system while I wait for IVIG. That or some major steroids. I started back up on them today, because the symptoms didn’t become significant until I discontinued them. Regardless, it’s time some doctor stepped in and recognized how bad my current situation is.

Behcet’s is sneaky. Your labs look great, and doctors think you’re exaggerating…until all of a sudden you’re seriously ill. I told everyone for months that I was deteriorating, two summers ago. Eventually I couldn’t move without violently shaking, and I still was treated like I could just “stop” doing it. It wasn’t until they checked my reflexes, and checked my pupils, that everyone finally realized I was in trouble.

My pupils were super dilated a few days ago, but thankfully it was attributed to a nausea patch I’d used. (Meant for sea sickness, but I was hoping it would help my overall nausea.) They’re still dilated, but at least they’re reactive and equal. Unfortunately they’re still dilated and that isn’t ideal. I can’t do anything, though. I’m stuck calling doctors and asking for help, when I know there isn’t help to be found.

Paging a Doctor…Literally Any Doctor

Dear Internet: I Owe You an Apology and Explanation

My last several posts have included no tags, no images, nothing, and then I went missing for several weeks. The whole purpose of this blog, my Instagram, and hopefully my eventual YouTube channel, is to raise awareness for all rare diseases, and to connect with people struggling with any illness, rare, chronic, and every other option out there. The reality of that situation, though, is that I’m sick, too. When you’re sick, and you’re sick but you want to help others who are sick, sometimes you lose yourself. I also fell into denial, and depression.

First and foremost, I’m still of the mind that IVIG is working. That being said, there has been a setback regarding where I’ll be going, when my next round will be, etc. My rheumatologist’s office hasn’t called once since the last round, which I find appalling. They had the nerve to take an extended lunch, and then to act as though they simply forgot my Zofran…a medication that was literally discussed at length the day prior, when I had my first day of that round of IVIG. There was an issue with ordering it, I had to get it in the middle of the session, and it caused a delay because you can’t run Zofran with IVIG, it causes the drug to clot.

Anyhow…

To the nurse practitioner, you seemed content in acting as though it wasn’t your fault…when it was. I became your patient. You agreed to cover for my doctor, and when she came back, you continued to be in charge of my care. It wasn’t something either of us wanted, but at least I had the politeness to be respectful. You’ve been told several times about my GI issues, and you know that I need IV Zofran for treatments. I use oral Zofran and medical marijuana at home. The oral Zofran takes a long time to kick in, and ha been less effective lately, as has the Phenergan and the Antivert. (I wish they’d prescribe me both so I could just use the Phenergan regularly, and the Antivert for cars, but that’s a whole different battle.)

The NP made it clear the to the infusion nurse that I needed to schedule an appointment, something we both felt wasn’t appropriate given the timing. I mean, the clinic is calling you to tell you that you made a mistake, resulting in the patient (me) being uncomfortable. Now you want to remind me, via the nurse, that I’m do for another appointment. The nurses there didn’t feel shocked when I said I hadn’t made the appointment because I was looking to change doctors. In fact, they looked relieved.

With all of that I ended up having a ton of stress, and a less than fantastic round of IVIG, again. There was some initial success, but with the gastroparesis issues, it was not a good month. Now, due to issues with my new doctor, I don’t know when IVIG will be. My first appointment, last month, was the establishing appointment and I was told that they would be setting up IVIG. They weren’t sure if they could do it in the clinic, since it’s a blood product. I did suggest they set it up with home health, as nurses who are qualified can come here and do it. The hospital near me also has an infusion center, though I haven’t heard great things.

Anyhow, the doctor didn’t order the IVIG. I went to another appointment, where he awkwardly announced he needed to go to the bathroom, upon which the medical assistant assured him that he could after he saw me.

What now?

We talked, and I was quickly frustrated. Not only had they not ordered the IVIG, he didn’t seem to remember that we’d had this entire conversation about a month prior. The doctor is well educated, but quite old, and ready to retire. Rumor has it that new doctors are coming into the practice soon, and it’s proximity to my house was a selling point. A friend is also a patient.

I did everything they wanted, and now they want a TB test as well. The general plan for me has always been chest X-rays. With the reactivity of the skin in Behcet’s, it’s easy to get a false positive. Even if you do have a positive (and you don’t have Behcet’s), the result would be to get a chest X-ray and note the positive reaction. Based on the chest X-ray, you may or may not be given medication.

Plus, let’s not forget, IVIG doesn’t suppress the immune system…

Obviously I’ll get a TB test if that’s what it takes, but with my flare already underway, it seems a bit of a stretch to expect me to run around having my TB test done, and then read a few days later. I could see if they’ll do it at a place downtown, or even in the office, so I can go near my roommate’s work, or near my home.

If you needed more on where I’ve been: heart rate regulation issues, port rejecting dissolvable sutures and making the whole area itchy and painful, living life without a bra even though I prefer at least a sports bra because of aforementioned painful port, losing weight because of gastroparesis, and when I did finally manage to eat a bit, I sprouted a massive GI bleed…

 

Dear Internet: I Owe You an Apology and Explanation

What Is Happening

This was not a pleasant round of IVIG. First a friend who was supposed to help me, bailed at the last second for personal reasons. Another friend stepped in for the first day, and the second, but then I was on my own. I went home, and my roommate thankfully helped by taking care of the dogs, because my body just shut off. For whatever reason, I was still struggling to regulate my temperature the first couple of days after IVIG. I was hanging out around 95 degrees, but I felt like I was burning up.

Then gastroparesis decided it should fuck with me.

I ate a potato, a very safe food, and several hours later the vomiting began. To be honest, I couldn’t sort out what I was throwing up aside from the potato, but it felt like things from days before. There was no desire to visualize, at this point it’s just throw up and flush. My bedroom light filtered in through to the bathroom, and I sat, in the dimly lit room, and just cried.

This was shortly after taking my night meds, and what had set me off was simply drinking too much water. I was thirsty, and I had to take my pills. It was so simple. I spent the entire night sleeping on the bathroom floor, too nauseas to move. The irony was that I’d thrown up my zofran, and I was far too nauseas to attempt to keep any more down. I smoked, but I received a bad batch of medical marijuana this time. It really doesn’t work for my nausea. (Probably because it’s mostly stems and leaves.)

All of this has brought me to a really difficult point in my thought process. I’m depressed, but it’s so much more than depression. There is this sense of denial that I’m struggling with. I spend so much time pushing other people to accept that my situation is not temporary, and that certain aspects will continue forever, but I can’t accept that myself. We’ll be retesting, but as far as I now, I have mild to moderate gastroparesis, moderate to severe gastritis, and general inflammation of the entire GI tract. There are things we can do for the inflammation and even gastritis, starting with the IVIG. (Well technically we started with GI medications to reduce acid, but I’m talking hitting the source not the symptoms.)

What about the gastroparesis?

It is what it is. I don’t want to live life with a needle in my chest, avoiding water, and being generally stressed by the pain and discomfort. I also don’t want to miss out on life all together, because I’m at home weak, or vomiting. Take today. I’m far less nauseated, but the simple act of taking the dogs out, has me back in bed thinking about taking a nap. The headache that’s finally abating from IVIG, is being replaced by one caused by my low blood sugar. Thankfully Gatorade is coming through for me, with slow sips, although why change up your orange flavor?

Seriously Gatorade…I expected orange and I get tropical mango? Not cool.

And maybe all of this is a moot point. Maybe it doesn’t matter whether or not I’m nauseated, whether or not I have a needle in my chest, and fluids strapped to my back. Maybe it’s all just a giant mess of people doing whatever they can to get through the day, and the next, and the next.

What I do know is that I have a headache, I’m not hungry, and I should find something edible that won’t have me vomiting again. I also only have $12 until Monday, and no food. Being poor while having expensive conditions is definitely a double whammy. Of course I wouldn’t be this poor if I didn’t have these conditions.

What Is Happening

Pain, Bleeds, and Now Uveitis

You can get IVIG more than once per month. A lot of people do it every two weeks, or every three. My suspicion is that I should be one of those people. My symptoms seem to come back about a week before my next treatment, and this month they returned with a vengeance.

It started neurological, then went to GI, while still leaving me wobbly. I got a really severe headache, but it went away, leaving me with just a dull headache. Then yesterday the headache came back, making me black out and fall. I was already planning on going in because of the persistent headache, and droopy eye, but falling meant I knew to call 911 rather than wait for a ride.

Thankfully we ruled out anything with my brain or the vessels in it, but everyone agreed my eyes didn’t look right. My pupils were super dilated, and while they could constrict to light, it wasn’t to the amount you would expect, and they bounced back to way too dilated right afterwards. An emergent appointment was scheduled for this morning.

My new eye doctor was great. The team was worried to dilate me more because I was already so dilated, but in the end we did it. After lots of testing, it was confirmed that I did have uveitis, but gratefully it was posterior, not anterior. The bummer is that I’ve had it before, and so this likely means I’m kind of at risk. The amazing thing is that we caught it early this time, so I’ll do steroid drops (without the dilation drops) for one week, and be rechecked. IF things look good, then I’m all settled!

I’m keeping this short because my vision isn’t the best, but I wanted to update, and remind anyone with Behcet’s, or other diseases that could impact their vision, to get regular eye exams!

Pain, Bleeds, and Now Uveitis

A New Level of Exhaustion

The Medrol dose pack has been a bitch, and it’s efficacy is questionable. My neurological symptoms have dissipated, but my GI issues are just as prevalent as ever. I will say, I’m not bleeding as much, but I’m also constipated. Constipation is bad for hemorrhoids. It becomes this constant game of, “where am I bleeding from?” Also, there isn’t anything better for your romantic life, than having to explain why you can’t sit on that hard bench.

Abdominal cramping, and bloating, definitely suggests that the ulcers are still very much active. The question is if my muscles have given up. When I have a combination of ulcers, and hemorrhoids (even ones I don’t feel), my body instinctively just refuses to move the last bit of intestines/colon. Autonomic neuropathy doesn’t help the situation.

Then you’ve got doctors, and none of them agree when it comes to medical marijuana. One insisted it would constipate me, but because I’m chronically dehydrated, which is a large reason for my constipation, vaping actually increases my ability to drink, which in turn increases the chances I’ll have a bowel movement. (Also, feeling better in general, and being able to get up and move, even for 20-30 minutes, is going to increase the chances of pooping, too.) GI doctors are either very pro medical marijuana or anti MMJ. My current team was horrified to learn that I’ve been smoking, and they were quick to suggest my usage is what causes my nausea.

  1. I never smoked until I was so nauseas I was emaciated.
  2. The only thing that effectively even dents my nausea, is MMJ.
  3. Last time I was in the hospital, I was vomiting so much, despite the medications, my admission team, and the nurses, were completely hurrying to discharge me so I could get home and vape.
  4. Chemotherapy, happened.

And look, I’m not saying marijuana never causes nausea. Heavy users can actually develop nausea related to their usage. It’s a reason why I am pushing heavily for us to find a prescription option to manage my nausea. It isn’t my fault that I’m allergic to both Reglan and Compazine, and that Zofran and Phenergan, only last so long. I’m using peppermint like mad, and I know ginger is a thing, but it’s a thing that makes me toss my cookies immediately.

My only real relief is IV Zofran, which isn’t an option unless I go on port access 24/7, and have nursing teams come train me to use my port to administer medications and IV fluids. Hell, the IV fluids alone would change my life.

I am utterly exhausted.

This isn’t an exhaustion related to being chronically ill in general, this is an actual decline of my physical state to a point where function has become nearly impossible. While people expect me to bounce back and be spectacular because of IVIG, that isn’t the case. IVIG is a lifesaving measure. Try as I might, I can’t seem to make friends understand the reality of that statement. Yes, I have symptom relief with IVIG, of severe symptoms related to neurological disease, and bleeding ulcers. It won’t always work, which of course this month, it clearly didn’t. It also isn’t a cure. I will begin to feel sick as the time comes for another round.

Lately I’ve been back to sleeping large amounts. Some of it is the steroid taper, and the fact that the steroids can make sleeping continuously impossible. The rest of it though, is my body surrendering to the assault of my own immune cells. The pain, the utter fatigue, the need to sleep, it overtakes me on a regular basis. I try and tell myself I’m going to do all of these things, and then I feel guilty when I fail. My new thing is promising that I’ll try my best to do these things, and to set realistic expectations for myself, and anyone else potentially involved.

A New Level of Exhaustion

The Fear Factor

The first two rounds of IVIG went well. I felt great until about a week before my next infusion. This round, not so much. Not too long after the infusion, I had a massive seizure. Granted the pharmacy had been out of my one seizure drug for over a week, and I was dehydrated, it still worried me. Two weeks after the infusion, I had symptoms that were similar to a neurological episode. They faded, and I chalked it up to issues with low blood sugar from my gastroparesis. Then the GI bleeding started.

My infusion was on May 1st and 2nd, and I’m having an all out episode. The bleeding began about a week ago. I thought it could have been something I ate, but I wasn’t eating much. Instead of getting better, it got worse. Abdominal cramping set in, and I began passing clots along with large amounts of blood. Yesterday I brought myself to the ER. I was pale, and sweaty. I went straight back to a room. Blood work, a urinalysis, and a CT scan came back clear, but it was obvious that my bleed was not just rectal. They gave me a dose of IV steroids, and now I’m on a medrol dose pack. I’m also being told to drink a lot of water, and eat iron rich foods.

Fear creeps in. Sure, I was stressed, and pushed myself way too hard after this round of IVIG, but what if this is a sign that the IVIG isn’t going to work for me? I don’t have other options. Plasmapheresis was discussed, but the doctors said IVIG was a much better option. Some countries have done bone marrow transplants, with success, but I don’t want that done either.

I know logically that this was simply a bad round of IVIG for me. There was a ton of stress, I pushed myself physically too soon afterwards, and ran out of seizure drugs on top of it all. My goal for the next round is to be as calm and focused on positivity as possible. Perhaps my friend Amy will come with me, and we can go get reflexology massages (if I can find a place that just doe the feet). IVIG doesn’t work every round, at least not in the beginning.

It’s just a struggle. I’m so close to deeply into my thesis, and my body reminds me that I need to slow down.

The Fear Factor