When People Mean Well…but are just MEAN

Over the years of being sick, I’ve dealt with a lot of welcome advice, and a whole lot of unwelcome advice. It started when I was a kid, long before I even thought, or my parents even though, about something chronic. To be fair my symptoms back then were even more vague than they were as an adult, minus the miserable oral ulcers. In my early 20’s,  though, I got married, and got sicker. It was a bad marriage, with a lot of stress, and situations that were hidden from the public.

One lie within the marriage was that I had fertility issues. I didn’t, but my ex did. We were young, and not ready for children anyhow, but when people questioned issues, I threw myself on the sword. To cover my ex’s ego, I said that I had fertility issues. At the time I was struggling with what doctors thought may be Lupus, but ultimately was just labeled an “unknown connective tissue disorder”. One woman very nonchalantly told me that my infertility was God’s way of saying I shouldn’t have children because I was sick. I sat there for a moment, wondering what she’d say if she knew the real situation, that my ex was the one with the fertility limiting issues, and the cause of those issues. (I should say as a disclaimer, while my ex did terrible things to me, and in our marriage, he has since gone on to have an absolutely adorable son. Given testing that was done, I was told that it would not be possible for us to have children without IVF. I was told that IUI wasn’t an option, and that with my health, IVF would be difficult.)

In any event, there was always more advice. Diets to follow, natural remedies to try, even healing crystals that would unblock whatever was blocked in my body. It was always something, and I was always polite. Until I had a diagnosis, it didn’t make sense for me to waive off the advice, even if it were things I would never consider. I am a scientific person, and without proof, I’m skeptical.

Then I got diagnosed, and the advice started to bug me. I also noticed that various fads would come into play. For example, I gave up gluten because my GI doctor recommended it. We couldn’t test me for Celiac’s Disease, because I couldn’t eat enough gluten to have it in my system for testing. I had eventually ended up eliminating gluten containing foods unintentionally, because I’d noticed certain foods made me sick, and others didn’t. There is actually evidence that folks with GI manifestations of Behcet’s, do benefit from eliminating gluten from their diets. The issue was that people started avoiding gluten for bogus reasons, and because I didn’t have Celiac, it was assumed that I was on the same bandwagon. I had to explain, repeatedly, that my autoimmune disease was benefited by elimination, and that for some reason my body couldn’t break down gluten.

The same thing happened with Aspartame. My current roommate still rolls his eyes when I refuse diet Coke, but will drink diet Pepsi. I have no clue why my body can’t handle it, but I can tell if I’ve gotten into it, and you’d be able to tell, too, if you knew me. Why? Well, I go from looking like me, to looking like a version of me that happens to also be seriously pregnant.

I’ve had friends chastise me, stating that I’m allergic to so many antibiotics, because I rely too much on “Big Pharma”. The truth is actually due, in part, to two separate things. The first is that the genetic mutation common in patients with Behcet’s, has also been linked to a condition called Steven’s Johnson Syndrome. Luckily I’m familiar enough with the situation, and it’s uncomfortable enough, that I discontinued antibiotics the first time I got it. A doubtful doctor prescribed a similar antibiotic, at which point SJS reared its ugly head, and I went to urgent care. I’ve been lucky to avoid hospitalization, but I do avoid any drugs I’ve had an SJS reaction to. The second issue is simple…my immune system is messed up. Whether or not I’m truly allergic to all of the antibiotics I’ve had reactions to, hasn’t been established, but it’s highly likely that I’m not. I am fairly confident I’m brutally allergic to Cipro, but the rest of the allergies I doubt. I’ve had seriously delayed reactions, I’ve had reactions in the ER when I haven’t been given anything. I’ll be seeing a new allergist soon, but I can’t do traditional testing because of pathergy issues.

Right now I’m dealing with a gnarly flare, including serious skin issues. I’m bracing myself for the advice. What to wash my face with, how hot the water should be, what to eat and not eat, various acne face washes…blah blah blah. The best part is…it isn’t acne. Please do not approach me and tell me I look good, but…just don’t. I don’t want to hear about your aunt’s friend’s daughter’s line of eco-friendly organic face cleansers. As much as you’re informing me from a place of love, your words hurt.

Unless someone is coming to you because they know on at least some level, what you’re dealing with, and you can tell they need advice, keep it to yourself. Unless you can say, “I hate dealing with that! I’ve always had to…” and leave it at what YOU’VE personally done, because you know someone is dealing with a specific illness…keep it to yourself.

I grew up with clear skin. One pimple was grounds for shock. When I started having skin problems, I thought it was acne. I was annoyed, that at 25, my skin was rebelling against me. I didn’t realize that what was going on with my face, could in any way be related to my Behcet’s. All my symptoms had been internal, aside from the joint swelling and long naps. Now I was covered on my face, with these lasting horrid pimple-like things. I also had raw red skin, from slathering myself with the various washes and creams I had self-prescribed, or obtained via well-meaning advice-givers.

You may mean well, but when you jump to conclusions about how someone looks, or what they’re doing, you may end up making them feel worse. Yeah, I may have an odd way of handling some of my day to day tasks, but that’s usually because doing it the “normal” way, is going to get myself, or bystanders, injured. My weird bumpy skin may prompt you to help, but at the end of the day, there isn’t really anything that can be done. It hurts. It’s frustrating. It just is.

Advertisements
When People Mean Well…but are just MEAN

Edit Undo Redo: EMG and OMG

 

So I had a whole blog typed up, but then fell asleep, because that’s my life lately…do something productive, nearly complete it, fall the asleep. The blog was about how the state of California thinks $200 is acceptable to live off of for me in terms of disability (that doesn’t even cover my trips to the doctor since I can’t drive), and how I hadn’t had a bowel movement in almost a full week. I also started Cell Cept (Mycophenalate), which the doctor had hoped would make me poop because it tends to give people diarrhea. (Oh, yay!) This past week was miserable, for oh-so-many glorious reasons.

First off, I kicked Monday off with an EMG. Since the first round of Rituxan they’ve noticed hyperactive reflexes. Now, I’ve had this issue before, but I didn’t really think anything of it. It was minor, and not a big deal. However, after the Rituxan, it was literally like whatever nerves activate for reflexes, were kicked into overdrive. There was a ton of initial concern after that first dose because I actually couldn’t walk, but it resolved, with just some numbness lingering in some of my fingers and toes. The reflexes stated hyperactive, however.

I’ve had an EMG before, and while it wasn’t a picnic, it wasn’t as painful as I’d read about online, so I wasn’t worried this time. Apparently I was overly optimistic. Before they even got to the part with the needles, I was in agony. The second they located some of the nerves on the inside of my calves, my legs jerked violently, with the right side being more impacted than the left (at least pain wise). The doctor actually had to hold my foot at one point because my leg was kicking itself off of the exam table. Then the needle portion came, and it was unpleasant until he reached one nerve, again, on the inner portion of my calve. My pain tolerance is high, but this was absolutely horrific. I started shouting to take the needle out, and he kept saying it was out, but it felt like it was still in, and the burning went all the way down, around my calve, and into my foot. He actually had to show me the needle to convince me it wasn’t in anymore. When he reached my feet, I tensed up mentally, figuring it would be worse, but I barely felt it, and finally when he activated the nerve to get a little jump out of the foot, it was mild, like the last time I had my EMG.

The doctor told me that the test results were borderline, which is the story of my life, but then he compared them to my prior EMG, and diagnosed mild neuropathy. At this point he doesn’t know what caused it, but I’m having an MRI on Monday. I don’t see the neurologist again until the 6th. I see my rheumatologist on Friday. I was in so much pain Monday, but rallied because I had plans with “the guy,” but he had to drive me the three blocks to his place, because the nerve was still tender for almost 2 days. Even now I’m still in pain, though I’ve noticed a general worsening neuropathy in the last 24-48 hours, which has me slightly concerned.

That’s the problem, they increased my Neurontin, which should in theory make neuropathy better, but I also started Cymbalta (for the depression caused by the Keppra) and then the Cell Cept. The MRI is to check for signs of Neuro-Behcet’s, which can be pretty brutal from what I’ve read (tendency to go after the brainstem) or MS.

Multiple Sclerosis has been on the table for several years, particularly because of intermittent issues with control over my legs. It should have been helped by the drugs I’m taking, though, not made worse. Of course, my body doesn’t always do as its told. My worry is that, because the Behcet’s didn’t go into remission, if I do have MS, it was stirred up by my treatment. You activate the immune system with these infusions, because you’re putting in antibodies. It’s great in theory, but potentially problematic if it doesn’t work. It didn’t work completely which is why I’m on the Cell Cept now. (I’d be on Azathioprine, but that stuff had me wrapped around my toilet with body aches and the chills. I couldn’t drink, or eat, and basically would have needed to be admitted to take it, and that’s not realistic for something you take daily.)

So now I’m on Cell Cept, and the other drugs, which has resulted in me being very sleepy in the mornings. I take my meds, and then fight to stay awake. I’m pretty much only coherent from 7pm-1 or 2am, the rest of the time I feel drunk or stoned, or I’m just flat out sleeping. I’m nauseas, a lot, and when I’m not nauseas I’m not hungry. The Zofran helps, but when it wears off it’s difficult to function. Anything I’ve eaten, I’m digesting slowly.

Today is bad because I actually had a bowel movement…for the first time…in 6 says. I’m so nauseas, and I’ve had more than one because that’s what happens when you literally don’t have ONE in almost a full week.

Depression is a thing. I mean, the medication takes a while to work, and it’s hard to be upbeat when your body feels like it’s abandoning you. I keep telling myself that my worth isn’t determined by one single thing. My illness impacts my life, but it doesn’t have to define me. Still, when you find yourself become a Netflix/Hulu/HBO Go/Amazon Prime aficionado…it’s terrifying. I also get worried because I want to work in a laboratory, badly, how can I do that with neuropathy? From what my doctor said, it shouldn’t be permanent, if it’s caused by the Rituxan, however, it also shouldn’t come and go and be bad like it is right now, if it was the Rituxan.

I just keep wondering where my life is going. It’s easier to tell people I don’t know what I want romantically, because I don’t know what I can give. Marriage isn’t as important to me as finding someone I love, who loves me back, and treats me well. I want someone who gets along with me, who shares my nerdy love, and at least has some similar TV show and movie preferences. I want kids. This is where things start to get complicated, of course. My neurologist quietly reacted to my reminder that I was in the middle of a divorce, and didn’t have kids, with a question about whether I planned on having them. I said not anytime soon, indicated I had an IUD, and assumed the question was relating to the medications I’m taking. His quiet reaction was to suggest I consider my family history, and my own health, because some autoimmune diseases get better during pregnancies and some get worse. You never know, and on top of it, there appears to be a strong level of heredity involved in terms of autoimmune disorders in my family.

Breathe in, breathe out, tell yourself that it doesn’t mean your life is over…

It’s more about wanting a somewhat normal life. As the guy has reminded me, nobody is fully normal, and fully healthy, but I do wish I had something easier to treat. I also wish that I didn’t look like an acne riddled teenager. People keep suggesting acne treatments, and I have to explain that it isn’t acne. Maybe steroid cream would help, but I’ve been to tired and too sick to get to the store and try it.

Having a chronic illness sometimes makes you feel lost. You feel like you are your illness, at least that’s been my experience. I know I’m a human being, but at the same time missing out on life starts to make me feel inhuman. My rheumatologist is thinking about sending me to the hospital affiliated with the medical school here, and it’s almost like I’m a case study at that point. Maybe I am…but I need to remember I am a human being, too.

Just breathe…

Edit Undo Redo: EMG and OMG

Steroids and Azathioprine (Imuran)

Ugh. That about sums up how I’m feeling about the current situation I find myself in. I have a mouth sore starting and it’s making me mad. The leg and face ulcers really shouldn’t have made me shocked to find my oral ulcers coming back to haunt me, but I guess I kept hoping it was all just my Behcet’s putting up a fight. Then the headache came this morning.

When I woke up, it was there, just like it has been, in the back of my head, with some added fun this time. My words didn’t make the most sense, and I was slurring my speech. Granted I’d only  gotten about 5.5 hours of sleep, and was de-caffeinated, I was still aware that I should be making more sense. I just shrugged it off. This is my brain on Behcet’s. Regardless of how my MRI’s have been in the past, and if my new MRI’s show no change, my brain goes rogue.

Today I got to see my primary care doctor and get some more Medrol injected (happy dance), which is going to allow me to skip the oral dose (shhhh don’t tell on me) tomorrow and the next day, while I’m out of town. Listen, I like the guy, and he does not need to smell methylprednisolone farts or worse, poops. Plus, I’d like to enjoy my mini vacation without constant gas and the fear of needing to urgently poop.

My rheumatologist was less thrilled with my, “let’s just throw steroids at me,” approach to handling the wait for the Rituxan to work. Testing me sometime in July seemed appropriate, but as time passes, and my symptoms worsen, even with periodic shots of steroids, I get her concern. Still, I know my treatment options from here on out, and they’re bleak as hell. Without even phoning in the blood test to rule out the gene for a rare type of genetic predisposition towards a weird kind of anemia, she phoned in Azathioprine (Imuran). Now, I’m not starting it on my trip, despite my primary care doctor’s suggestions I get it going, for a few reasons.

  1. I don’t want to throw up or have diarrhea, both potential side effects, and ones I always seem to get when I start new oral medications.
  2. I don’t want to end up in an ER out of town, without my medical records, ruining our trip.
  3. We’re finally going out of town, I am not starting a new really shitty drug on literally DAY ONE of that trip.
  4. Who tells their patient to drive 2+ hours away and then start a drug like Azathioprine when they haven’t been tested for the genetic mutation you’re supposed to check for prior to administration?

Right. Okay. We all agree? No Aza for me until I return. Then I’ll take it and throw up and go to the ER, and we can get onto the difficult task of the next step.

I thought we were talking about Cellcept, but it turns out we were talking about Cytoxan…in doses that would mean I’d lose my hair, probably throw up a lot, and also likely end up infertile, or nearly infertile. Yay! Sign me up. My insurance won’t cover egg harvesting, or freezing, not that my soon-to-be-ex-husband is going to rush to help figure out how to get it covered seeing as, you know, he’s about to my official ex…

Positives are I can totally dye my hair blue because it’s going to fall out anyhow…negatives include being bald. The guy dates the sick chick with the patience of a saint, but let’s be realistic…I’d need wigs, good wigs, because I don’t feel like being 30, single, and bald, is going to do wonders for me, especially when you consider I’ll have a port in my chest, too.

Oh, did I leave that part out?

I have shit veins, so they always go hands, but because of the nature of the drug, and frequency of delivery, I’d get a port if I wanted to stay at the center I was going to…because it’s more time efficient. Yeah, let’s just put a port in because I have difficult veins! For fucks sake can we try a little?

Mostly I don’t know how to tell the guy that this is the situation as it stands. He was so positive about the Rituxan, and I was, too. I still am, but I really don’t want to start the Azathioprine. He’s looked up a bunch of drugs, and options, and has even said I should go to NYU to seek out other treatment options because I have the gene mutation and maybe that bumps me up some research list. He’s so helpful, and wants so badly to be able to help me find a way to treat and achieve remission, it’s hard to explain to him that getting there may involve a lot of hard sacrifices.

He isn’t my boyfriend. We’re talking about harsh drugs. Potential hair loss. Body changes have already happened, and he’s been supportive, but these are even more drastic. At what point do I get friend-zoned? At what point does my illness become too much of a part of my life to warrant keeping me in too much of his life? Why must I be single and sick, when dealing with either is enough of a bother as it is?

My life has been turmoil filled from the moment I was born. Literally, I died during my birth for a bit, my heart sort of stopped, then started again…Nothing came easy, and I fought hard to just survive. To care for siblings, hell, to raise them, when I was a child myself. I weathered abuse, as a child and an adult. I fought, and I lived, but now I’m facing the prospect of having to lay back and recover. To be alive, but not really living my life. That’s why I’m taking a trip tomorrow, to see a show tape live. It’s why I am staying as long as I feel well up in LA so I can knock some things off my bucket list that are there. That’s why I’d like to try and get to San Francisco before the Aza kicks my ass, or I’m forced to start seriously considering Cytoxan.

Breathing in and out and smiling and joking, it comes easily, because it’s not always real. inside I’m screaming, crying, wanting to be held and told it’s all going to be okay, even if I don’t believe it. That’s the thing people need to understand that’s often odd about someone chronically ill. Sometime we will lash out when someone says it’ll all be okay, because it won’t, it really won’t. It will be okay some days, and other days it won’t be, but it will never all be okay. Still, on days when we get the worst news, sometimes we just need to be held, to cry, to scream, to ask why without getting an answer because there are no answers, and to be told that no matter what it will be okay. Not all of it, but some of it, and that’s all we really need.

Steroids and Azathioprine (Imuran)

Talking About Fertility When You’re Trying NOT To Get Pregnant

Oh the joys of having an autoimmune condition, while navigating a contentious divorce, and a new casual, but complicated, dating-like relationship. With the failure of Cimzia, Rituxan is on the horizon, and the guy I’ve been seeing has been amazing about it. Despite our casual status, he’s all hands on deck, taking me to the ER when I was too stubborn to go this past Thursday, and researching Rituxan to put my anxious mind at ease. Still the ER brought about some interesting conversations.

First off, there was the fact I go by my maiden name socially, because I’ve been done with my ex for a while, but still have to legally use my married last name for documentation. Nothing like the guy you’re seeing handing the nurse your military ID card with your dependent status, and of course, spouse’s name, and information, all right there, because you’er too high on pain killers to navigate your purse, and too in pain because you’re still in pain, to care.

Yup.

Then there is the inevitable, “Any chance you’re pregnant?” question that comes up before they drug you and take x-rays. I’d already given my last period dat to the nurse in triage (sans the guy) but because I have an IUD, that date is always spotty (no pun intended) at best. Still, I’m definitely not pregnant. I wasn’t 20 days ago in the ER when they checked, and shocker I wasn’t when they ran my urine this time, too. Of course that doesn’t mean the guy didn’t have that moment of pale faced terror when the question was asked.

Definitely not. No chance at all. Yes I’m sure. 

This hasn’t been the first time the subject has come up recently though. With Rituxan on the horizon, Cytoxan has been discussed if Rituxan fails. Moreover, some doctors have suggested waiting a year to get pregnant once Rituxan is stopped. So if it is successful, and fingers crossed it will be, I’ll still have to choreograph future pregnancy around it. At least I won’t ever be accused of getting pregnant to trap a guy?

My doctor has told me that Rituxan isn’t the drug of choice for my level of Behcet’s involvement, that it has shown promise, but that doctors have been using Cytoxan, the chemotherapy agent, for a longer period of time. Essentially, it’s efficacy is perceived to be greater because it has a longer track record. The dosages would mean that I could because infertile.

As I spilled my guts about all of this, the guy I’m casually seeing, I realized how absurd the interplay really is. We are casual, but he wants to know about my condition. We’re casual, but he wants to be there for me through my infusions. We’re casually, but in the ER we have that moment of, “Yes I promise there is no chance I’m pregnant,” and I know on some level he’s relieved because even if a girl tells you she has an IUD, and you believe her, there is a small part of you that is grateful that she really honestly is that convinced her birth control works.

What about the fertile part of it though? Can he possibly understand, in the context of us being casual, what my fertility means to me? I was married to a man who lost his ability to have children without the use of IVF, and I loved him. We fell apart when his continued infidelity, and straight up narcissistic sociopathy made it impossible for me to try and make it work. Plus I stopped loving him somewhere in the midst of realizing he was a narcissistic sociopath.

I stare down this path, with a drug that could work, could bring on a remission that allows me to live a more normal life, and I’m excited, and scared. I stare down that path with a man by my side who I call my friend, because he is, above all else, exactly that. I know that we’d be there for each other, regardless of the other aspects of our interaction (yes, I’m avoiding the word sexual relationship). We don’t say we’re friends-with-benefits, because that sort of feels like it devalues our friendship, and honestly, I’m okay with that.

If a time comes when what I want, and what he wants, means that we no longer have a sexual relationship, I hope we can find a way to preserve the friendship, because we truly have been there for each other through so much and when he says he can’t imagine life without me, I believe him. I feel the same for him, and while I may be more emotionally invested, I’ve backed away lately to view it in a different manner. Yes, I care about him, I care for him, but I also care about the life lessons he’s teaching me.

Still, fertility is as sensitive subject, and even with a friend, or casual relationship-type-thing, it’s hard to broach the topic. We ask our partner if they’re preventing pregnancy, but it’s usually a muddled mess, somewhere between, “condom?” and “the condom broke,” and the people who don’t bother asking at all, are those of us who genuinely want a conversation about preventing pregnancy, the options, and an honest answer. When I got my IUD, it was easy to tell this guy, “I have an IUD, I can’t get pregnant due to my medications,” and I left it at that. I didn’t think I’d end up having him absentmindedly make a statement one day where he said, “Someday when I have kids,” and have my reaction be to think about it, because he rarely does talk about the future. He worries about it, but he doesn’t plan it out, and he never talks in certainties.

For the first time, I’ve hit my own potential certainty, that being I may never have biological children. The thought of going through chemotherapy scares me, but the thought of being 30, mid-divorce, and losing my fertility, after leaving an infertile husband, is just sort of cruel karma. It’s like the universe put together two people who would end up unable to procreate, but they left each other, and now we’re slowly helping with population control.

That’s assuming I end up infertile, which the guy has tried to assure me won’t happen.

He like stop point out I’m a rarity, because I am, and that there aren’t a ton of articles in which there are a lot of research subjects, because Behcet’s patients are rare, and near-Behcet’s patients are rarer. He’s offered to write researchers on my behalf, playing up the drugs I’ve failed, the reasons why my case is complex, and the various statistics that make me a prime candidate if they can get my treatment funded. It’s all positive, which is what I need, and scientific, which is what I need even more, but there is something kind about it, too. Some women find chocolate sweet, but this does it for me.

Except maybe it shouldn’t. What if he falls for me? What if he realizes he wants more from me than casual and then they put me through chemotherapy? What if I can’t travel the way we both want to, and I can’t give him children? All of the future fears, the fears that usually plague him, the what-if-this-goes-wrong thinking that he’s so good at, comes tumbling out of my brain.

Because that’s chronic illness.

I could start Rituxan this week, and be in remission within 2-3 months, or it could fail miserably and I could be on chemo within the same amount of time. I can’t know, and so I approach the future with a wants vs. needs mindset. I’m so good at knowing what I want, while he hesitates because he’s afraid if he wants something, and changes his mind, people will be disappointed. The part that sucks is knowing what I want doesn’t stop me from worrying I’ll disappoint people, because I’m never sure if I can live up to the wants and needs of myself or others. My body is the unpredictable thing, and sadly it’s attached to me.

It’s hard trying to maintain a casual attitude when your life feels so damn serious. I do take things as they come. I don’t have expectations when it comes to he and I, simply because it doesn’t do anyone any good to expect things from someone just because they’ve done one thing, or offered to do another. Sometimes I worry I’m a drain on him, but I tell myself that he’s an adult, and arguments could be made both ways. Friends have insisted I’m limiting myself by not dating more guys, but I don’t have the energy, or desire. I like this one, and I’m fine with just him.

Still, the casual take-it-as-it-comes attitude get’s a little jostled when the doctor nonchalantly asks more than once if you’re sure you’re not pregnant.

Totally sure doc. 

Then it gets jostled again when you’re forced to talk about the future even though the two of you, as a general rule, don’t. Yes, I want to have kids someday. Chemo is bad for a lot of reasons, but when you are told it’ll kill all of your eggs, probably, that’s kind of a heartbreaker.

Talking About Fertility When You’re Trying NOT To Get Pregnant