Holy Moldy…and HLA Positive!

So much to talk about! I’ve been sick for the last few months with what seems like one ailment after the other. To top it off, I don’t ever really seem to recover in between. I’m not full on flaring, but I am having a lot more symptoms of my Behcet’s which is aggravating. Of course the constant infections make increasing my Humira, or using steroids, a questionable decision.


Last night I decided to deep clean my room, including pulling off the memory foam mattress cover. I had intended to flip the mattress, and surprise surprise, there was mold all over the damn thing. The whole underside looked like a Petri dish, and little black spots all over the top…where I sleep…showed that the mold had gone totally through the entire mattress. Gross. I’m not allergic to mold, but I do know that I don’t handle being exposed to it well. I talked to my rheumatologist and she confirmed that tossing the mattress was the right move. She also said getting an air purify would be a must. It isn’t something I can afford, but it also isn’t something I can’t afford to ignore. Then I got some interesting news…my genetic testing for the gene mutation associated with Behcet’s came back positive. 


Every test I’ve ever had for anything has been negative. The Behcet’s diagnosis hinged on symptoms, and I met the criteria, but of course being a caucasian female, a lot of doctors questioned the diagnosis. I could show up, papers in hand, and have doctors order a full list of other tests because they simply couldn’t accept that Behcet’s was causing my symptoms. Now I can say that I have the gene predisposing me to the condition, and the symptoms. For the first time in the 8 years I’ve been trying to get diagnosed, a doctor has said the words, “You 100%, without a doubt, have Behcet’s Disease.” Even my old rheumatologist made the diagnosis, but wouldn’t say 100% certainty.

It may seem insane to people who don’t struggle with a hard to diagnose condition. “How on earth could this woman want to be sick?” I don’t want to be sick, I just am, and I would continue to be sick whether the test came back positive or not. The positive result just means doctors take me seriously, and the tiny bit of doubt that my current doctors dealt with, is going to fade. Yes,  I could get another autoimmune condition later, it’s not like having Behcet’s shields me from my family’s history of Lupus or thyroid conditions, but it does give me answers for now, and that is amazing.

As for the mattress…I threw it over my balcony last night, and then threw down as many blankets as possible and slept in the room that I’m sure is still full of mold spores. “The guy” invited me over but my stomach is still off, and I didn’t want to intrude on his space for two nights in a row. I’m definitely heading over tonight once I finish up some homework and shower. I’m not at a place where I feel comfortable being a total bum around him, even though he’s seen me very sick. I still very much would like him to see me as something more than casual, someday at least, and I don’t think I’ll get there as the girl with all the issues.

I’m hoping that the mold situation going away marks an improvement in my health. I know the first time I started getting really sick, was in an apartment with severe mold issues. I had a ton of GI symptoms, too, so it’s possible getting out of this apartment would really help my body recover. That of course requires finances, and when you’re in the midst of an amicable but strained divorce process, you’re not flush with cash. (You’re also not doing well financially when work cuts your hours to zero, and your second job has yet to schedule you for training!)

Despite all of this I just keep telling myself the good parts exist. Having that blood test really made me feel at peace. I knew I had Behcet’s, but I’d been treated as crazy for so long that I really needed more validation. The doctor telling me, with 100% certainty, that I had this condition, was a huge relief. Knowing something is different than having other people validate what you know as true.

Holy Moldy…and HLA Positive!

Bronchitis Anyone? Graduate School and Work Problems, Too

Okay, so when I went to the doctor least week I expressed concern that my lungs weren’t lung-ing the way they should. (I’ve officially decided lung-ing needs to be a term.) I know I talked about the doctor saying my lungs were constricted, with the right side definitely having a harder time than the left. I left confident that my issue was simply inflammation, and I wasn’t catching my guy’s (note: this is how I’m choosing to refer to him, for now…the term is definitely going to to change because we’re casual, so the references will be too) cold.

Now, here’s the thing about having a chronic illness…you’re always sick. Seriously. I will never wake up and not have Bechcet’s. My dad is never going to wake up and not have Lupus. We may going into remission from time to time, but when you have a chronic illness, it’s *shocker* chronic. I have accepted this fact, but it’s made acknowledging when I’m actually sick (like normally people sick) difficult.

I spent Monday night at the guy’s place, after getting a new inhaler and thinking my problems were solved, but woke up on Tuesday with a brutal sore throat. I called my doctor, and he felt it was probably thrush, or the start of thrush, because I wasn’t rinsing and spitting after using the new inhaler. Fair enough. He says to call him on Wednesday if things get worse. Well, Tuesday evening I have to go to a mandatory meeting at work. The meeting was pointless for me, because none of my concerns were addressed. I’m pretty I sure they’re working on a way to fire me, and I just hope they don’t make me come into the office to be fired. I work from home, an email would suffice. “But they can’t fire you for being sick!” Theoretically that’s true, but anyone with a tendency to get sick, a lot, knows that employers find other legal ways to let you go when your illness becomes a burden.

In any event, I started coughing so hard before the meeting, there was blood. Yeah…tell me I’m not dedicated to my job when I show up wearing a mask, coughing up blood, and then go totally ignored when it comes time for suggestions.

Wednesday I call my doctor’s office as soon as I get up. I can’t breathe. The pain in my right lung that was in the lower portion, is now the entire lung, and I know I have bronchitis. This is how it goes with me. I have a day where I think maybe I’m getting a cold, but then bam, it’s in the lungs, and it sticks. I haven’t had just a cold in years, but bronchitis? This is my second bout this year alone. I show up for my 2:15 appointment, and I am winded. I’ve been hyperventilating pretty much all day because I can’t take a deep breath. Walking to and from my car is exhausting. My oxygen saturation is good, which isn’t shocking, because I’m doing my best to breathe however I can. I woke up that morning with purple nails, and I’m trying not to get back to that place.

Problem 1: my doctor is terrified of me. He’s a nice man, a good doctor, but I think having an immunocompromised patient terrifies him. Most of his patients seem to be rich older residents of the fancy community where I live, with a couple younger patients thrown in. Rare autoimmune condition patients? Not his strong suit. His medical students love me, but everyone seems to be fascinated and scared all at once. He is worried because of the Humira, that I may actually have pneumonia, despite the vaccine, or that I’ve partially collapsed the lung, or even have a tension pneumothorax. Basically, he’s freaking out. He wants to give me a shot of antibiotics, and order an x-ray, and the thought of having to walk to the adjacent hospital actually makes me want to scream…if I had air to scream with. He then decides he’s too scared when I tell him it’ll take me a while to get there, because I can’t go more than 10-15 steps without having to pause to breathe. This earns me a ride to the ER in a wheelchair courtesy of the medical student.

Problem 2: everyone fears you have tuberculosis. I don’t even know where I would get TB, but because I’m on Humira, and I’ve coughed up blood in the last 24 hours, and been losing weight, I am repeatedly begged to keep my mask on. Now, ER staff usually don’t worry to bad about the mask when you’ve got a cough, some do, some don’t, but I got my own room (bonus given the number of people there for GI issues).

Problem 3: I’m my best doctor. I get chest x-rays, and a liter of fluids which I begrudgingly accept since I definitely needed them. Between the time I got to my doctor’s office, and my discharge from the ER, I’d wasted over 4 hours…and I had a homework project that was due the next day, an extension I’d already been granted, but now would probably not be able to meet. Aggravated is an understatement, I was downright pissed. Worse? I didn’t want (or need) the antibiotics my doctor ordered, and I have no intension of taking the cough syrup with codeine unless it’s absolutely emergent. What I needed, and didn’t get, was a nebulizer.

I spend all day Thursday, dripping with sweat, trying to finish this project for school. I got so close, but I just couldn’t muster the strength to finish. I had the photos done, but the actual Power Point and photo log were a mess. I was shaky, feverish, nauseated, and my lungs were screaming for air. I told myself I wasn’t doing this anymore. I needed a nebulizer. I had a viral bronchitis that was working its way towards becoming pneumonia, and the only thing that was going to stop the freight train was a nebulizer. Plus the amount of oral steroids the doctors wanted me to take was asinine.

Friday morning I call my doctor and leave a message for his nurse. At this point I have to pause every 4-5 words to take a breath, because breathing has become that much harder. Granted I’d just woken up, so it was at its worst point, but I thin the message made an impact. The doctor called me back, and was shocked to hear how much worse my breathing was. While my service dog isn’t trained for respiratory illness, he was definitely unhappy with my breathing rate. He couldn’t figure out if I was having a panic attack or losing consciousness, but he was stuck to my side, and really not sleeping fully just in case.

All the pharmacies were out of nebulizers. Seriously. They either didn’t carry them, or were out. Winter illness woes. Luckily the community pharmacy was sweet, she called around and found a medical supply company who would sell me one for $40. Seriously? If I’d known they were that cheap, I’d have bought one ages ago! I rush to the supply store, mask on face, breathing terribly, and buy the machine. Then I manage to drop my rent off (five days late…oops), and get my steroids for the nebulizer. I return the steam machine I’d purchased for $50, effectively saving $10…but getting actual medical equipment. (Have a WTF moment, trust me I did.)

Get home, start to work on the project because now it’s like 5:15, and I need to turn it in. I wasn’t explicitly given another day to work on it, but I wasn’t told my time was up either. I accept that handing it yesterday instead of the day before may have cost me a letter grade, but whatever. I realize, hey, I can’t breathe, so I hook up the machine, and begin the breathing treatment.

Spoonie Moment: hooked up to your nebulizer, in pajamas soaked with essential oils, hair a mess, dark circles under your eyes, while typing furiously to finish a graduate school project, and simultaneously wondering if you should at least attempt to log in and get some work done because you’ve been MIA from your office tasks for days

Maybe I’ll get in trouble for having missed work, but you know what? I was honestly at a point where getting up to go to the bathroom was taxing. People have been calling out left and right at my job for stomach bugs and strep throat…even though I work from home, it’s possible for me to get so sick I can’t work. I also missed the start of a new class, which sucks, because that means I’m spending today and tomorrow attempting to play catch up.

Do I regret taking care of the guy, since I undoubtedly inhaled his germs, and my shitty lungs decided to cling to them? No.

Here’s the thing…

I could live life in a bubble, but I wouldn’t be living life. I take the precautions I can, with what I can. My roommate is amazing. She washes her hands the moment she gets into the apartment. I wouldn’t take care of him if he had a stomach bug, because I have a history of literally almost dying when I catch any type of GI illness. (I’m not exaggerating. For some reason I get ketoacidosis really fast, and things go downhill. I’m usually hospitalized for at least 5 days, and my kidneys and liver tend to nearly shut down.) I’m not saying if you’re my significant other I wouldn’t toss some fluids and soup your way, I’m just not hanging around the den of death to cook it for you.

I have realized I need to change a few things. For starters, the school needs to know that I have a chronic illness. My program is fast paced. One class at a time, each four weeks long, with the exception being longer classes for thesis type assignments. (Undergraduate was Capstone, graduate will be a Thesis.) I have one “F” on my undergraduate transcript that haunts me to this day, even though I graduated with a 3.34. I wanted to graduate with honors, and I didn’t. I was sick, I missed a ton of class, and when I changed programs, the unfinished coursework went to an “F” instead of an incomplete. Sometimes spoonies live in denial. We want to be as normal as possible, and we forget that it’s okay to have limitations.

Sometimes it’s hard to have an invisible illness, especially if you’ve been forced to act like you feel fine for a good portion of your life. I was raised in a family where, “You’re fine,” was uttered countless times, often when I really wasn’t fine. Plus we have so many relatives with autoimmune disorders, we tend to just pile it on ourselves and hold ourselves up to the standards of those around us, without stopping to assess our own abilities to function. I’ve watched my father nearly die because he pushed himself too hard, and I’ve had to realize that part of having an invisible illness, is recognizing when it’s time to make it visible.

The first night I spent over the guy’s place, I dumped my meds out on the table without thinking. I then had to explain that I’m not a drug addict, I have an autoimmune disorder. Being a science nerd, he asked which one, and I knew he wouldn’t know Behcet’s (rarely does anyone say they’ve heard of it) so I tell him I’ll tell him if he promises not to Google it. (The photos are terrifying.) Then I tell him if he does Google it anyhow, not to freak out, because I’m not as bad as the photos, and my symptoms are relatively in check.

Now they aren’t, and I think it’s time to do another dating with disease blog…so I’ll end this here and start another. Two for one day!

Bronchitis Anyone? Graduate School and Work Problems, Too

The Non-Believers, I’m Not Your Doctor, and Disability Misconceptions

I have Behcet’s. Seriously. I have it. You can doubt it. You can tell me it’s rare. You can suggest we retest for lupus markers over and over, and maybe someday I’ll have lupus, too…but that won’t mean I don’t have Behcet’s. I tend to rejoice when I see the same doctor in an ER, or when a new specialist is excited to see me because they rarely get Behcet’s patients. When someone looks at me with the, “sure you do,” facial expression, and starts to lecture me on rarity, I can already feel the needle stick of the impending blood work.

What makes it worse, is that it took seven years for me to get a diagnosis. During that time the cocktail of drugs thrown my way was endless. Even now there is always a shuffle. What to take for PTSD, that doesn’t impact the seizures, which may or may not (I’m leaning towards may) be related to my Behcet’s and all the drugs that I take for that. When you’re chronically ill, you become sort of an expert at things like, titrating your steroid dosages, and which over-the-counter drugs work best for a variety of ailments. You also know when something is ER worthy, urgent care worthy, or can wait for a visit to a regular physician.

When I say, “I’m not your doctor,” I’m joking. Truth is I don’t mind telling you what you should take for that cold, or why your child’s rash is something to worry over. If I have to live with feeling like crap a majority of the time, and catching bugs on a pretty regular basis, the least I could do is share the information I get from those experiences. I recently helped a friend with some steroid dosing, because Medrol dose packs are great, if you need a whole dose pack. If you don’t, then you’re going to experience all the fun side effects for no reason. You can do a slower titration of the meds by just taking them like you would a 4mg pill, instead of following the dose pack instructions.

I am in no way condoning the people reading this blog to disregard your dose pack instructions. If your doctor gave you a dose pack, and told you to take it per the instructions, follow the instructions. I am on a specialized protocol with dose packs, I take two, one in reverse order, then one in normal order, because I can’t handle the packs the way they’re prescribed. I follow my doctor’s advice. PERIOD.

That disclaimer out of the way, let’s be real, people self medicate. They have meds laying around, and they wonder, “would this help or hurt,” and I’m often the one they turn to.

As for life…stress is destroying me, but I’m taking it a day at a time. I can’t do anything but push forward, take my meds, and be thankful the current flare I’m experiencing is mild. It’s my fault, I was a few days late with injecting because I changed injection date and forgot, and I’ve been stressed which doesn’t help.

File for disability already.

My soon-to-be ex-husband likes to constantly push me to file for disability, because he thinks this will somehow magically fix my income issues. Even if I qualified, the low amount I’d get wouldn’t help as much as actually working does, which is the point. I can work. Yes, I had a rough few months, I had a kidney infection, followed by bronchitis, followed by knee surgery, and another kidney infection. This set of flare,s which set of seizures, and all in all it was a messy fall/early winter.

He thinks if I can get disability, his alimony will be lower…but that’s not how this works (cue the commercial “that’s not how any of this works”). Getting disability is hard, and it’s also something that I firmly believe should be reserved for people who really need it. I am not going to slow the process down for others, when I’m capable of working part-time. Right now I’m lucky, I work from home, and I do most of my school work from home. Hopefully I can get on a new med protocol, and stay healthy.

Just stay healthy…easier said than done, but it’s going to be one of the mantras for 2016.

The Non-Believers, I’m Not Your Doctor, and Disability Misconceptions

Your Health vs. My Health. vs. The Right Thing to Do

On the 23rd it will be one year since my Pop-Pop died. To say we were close would be an understatement. I spent nearly every weekend with him growing up. He and my Nana were beacons of light during a turbulent time. Regardless of what was going on in the less reliable parts of my home life, their little house was an oasis of peace and joy. When I moved away to college and got married, they loved my husband, and I was never honest about the abuse because I didn’t want to show them that I was living what I was living. I felt like a failure, and I also expected my spouse to change. He never did, but I was in so deep it felt like I couldn’t do anything to escape it. I knew they’d be devastated when they found out the news, so I sort of mentally and emotionally shut down. I went on autopilot and figured I had time to come up with a strategy.

In January of last year I was slated for an endoscopy/colonoscopy after a potential bowel obstruction. (The doctor in the ER wrote it off as an impaction, but then gave me instructions on manually fixing it myself. I was so backed up that when I’d arrived I couldn’t even urinate. I was dry heaving and in agony. I talked to a gastroenterologist who reviewed the films and was shocked I hadn’t perforated my bowel. Feeling was that I had a mild blockage, and that my own willingness to do the grossest thing I could think of, was the only thing that kept me from rupturing intestine.) My nausea had been getting worse, as had my abdominal pain, and they really wanted a good look to check for ulcers, so it was time to have my third colonoscopy/endoscopy.

A few days before the procedure my dad called to tell me that my Pop-Pop was sick with pneumonia, or a least that’s what they thought, and had been admitted to the hospital. I asked if I needed to come and skip my procedure, but he said absolutely not. My health was important and they anticipated he’d be released soon. His condition was up and down prior to my procedure, but it wasn’t until the day after that we received the call to come, immediately. It was early in the morning and my husband came in and woke me up. He handed me the phone and my dad told me that my Pop-Pop had fallen in the night. He was on a ventilator, something he hadn’t wanted, but my dad had made the decision to put him on the vent so that everyone could have a chance to say goodbye.

We rushed to say goodbye, but when we got there he was actually improving. I don’t remember how long we stayed, or even where we stayed. I made him smile at one point, despite the ventilator, and it made my Nana so happy. My dad was distraught. He knew my Pop-Pop would hate to be on a breathing machine, there were signs of him hating it already, but there were also signs he was improving. What was meant to be a simple prolonging of life until family from around the globe could say goodbye, turned into potentially saving his life.

At some point we (we being my soon-to-be ex-husband and I) must have returned home. I don’t remember returning home, really, I just know that we hit a point where we had paperwork to sign for a house we were buying, and that it looked like he was doing better, well enough for us to return home for a few days. My father kept asking me before I left if I really thought my Pop-Pop would improve, I was honest, if his kidneys didn’t improve, then he’d need dialysis which he clearly would refuse. If they didn’t improve, it was over. Still, there had been some improvement, mild, but still, and that was something to hope for.

During his entire hospital stay while I was present, I was brought in for rounds with a few of my aunts and my dad. My dad wanted me there for support, but also because I understood the jargon. Despite all of us being some sort of autoimmune patient (most of us anyhow) I was the one with a medical background because of school. I broke things down into simpler terms for my dad, and my Nana, and left out the information that really didn’t matter in terms of what they were needing to know. My dad also said he appreciated that I didn’t bullshit anyone.

My one cousin broke down sobbing, and nearly fainted after seeing him with the tubes. There was a lot of blood (he had a severe nose bleed because of his NG tube), and I took care of her. I sat her down, got her water and cookies from the vending machine, and held her and stroked her hair. I got coffee for aunts and uncles who fell apart. I took care of my Nana, who was stoic, but hurting. I was the one who went in and out of the room with her often, and down to the cafeteria if she needed something. My dad and I took turns caring for her. I hated to leave, but things looked like they were getting better. Knowing my health concerns at the time, my dad told me to go back for my follow-up appointment, and that he’d call if anything changed. It was only 2.5 hours away I could come if I needed to, and quickly.

When the call came there was no chance to say goodbye. He was already gone. I sobbed. I’d cried leaving the hospital the last day, the day that I knew he was teetering on the edge of life and death, but I’d hoped against hope that he would improve, that he would regain kidney function.

I hated that my soon-t0-be ex was going to be one of the people carrying his casket, but my Pop-Pop only knew the good military man I’d let him see. I couldn’t think about those things then, though. All I could do was be there for my family. Aunts and uncles falling apart at losing a parent. My own mind wandering to my dad, and his lupus, hoping against hope I wouldn’t have to face this anytime soon myself. I took my Nana to get her hair done, helped her bake and cook when she wanted to do it to take her mind off being alone for the first time in 62-years. I did whatever I could to help. I made my dad promise that he’d let me know if he needed anything, I was only a couple hours away, and he said thanks, but never really asked for help. I visited a few times, staying with my Nana each time and helping her with errands, but that was it.

When I left my ex in July, I was tormented. Coming back to California meant leaving my dad and Nana in New York, and I knew the burden of making sure Nana was at the bank and church and wherever else she needed to be or go, was falling on him. He has lupus, pretty majorly, and I wanted desperately to make the selfless decision to return to my hometown instead, and care for my Nana. Live in her basement and be the one to take her to church and the grocery store, but I knew I couldn’t. For my sake.

I’d spent years following an abusive spouse around, putting my wants and needs on the back burner, and as my health issues began to really take hold, I was forced to hop from doctor to doctor when we moved. The winter in New York had been brutal for me. I had flare after flare despite medications. I had the flu despite the flu shot, bronchitis, and nearly got pneumonia. My liver function tests were poor, but my doctors were still considering increasing my meds, and possibly adding steroids. The concern was that I was constantly starting to flare towards the end of my Humira injection, which meant the drug wasn’t working to keep my Behcet’s at bay.

My father understood, but it c rushed me. To want to the right thing for family, but feel forced by your body to do the right thing for yourself, is gut wrenching. While my health in California hasn’t exactly been stellar, I know that a lot of what is going on here is stress related. I still may need to increase my Humira dosage, but that’s just part of fighting this kind of condition. Sometimes you feel like you’ve got the other hand, and other times you’re reminded that you don’t.

I live with this fear of my father getting sicker again. He’s done well on his current regimen, but doesn’t always take the best care of himself. If he were hospitalized, I don’t know that anyone else could take care of my Nana the way he does. I would have to drop everything and fly to New York to stay with her and of course be there for him. The thought of him passing before my Nana makes me feel physically ill. There is no question I would need to move in with her, to help her, but at what cost?

In a family plagued by autoimmune conditions, who is the one to fall on the sword? Shouldn’t it be the least sick of us all? We know who that is in our family, but that person won’t step up. They already refuse to help much despite the close proximity, and the fact that my father has health issues while this person does not. (Okay, technically they do, but not like most of us in the family have.)

My dad and I are the same person. We sacrifice because we don’t really know any other way to be. I couldn’t imagine not taking care of my Nana, just as I’m sure he couldn’t imagine not helping her either. Still, the costs are real. The stress and pressure to care for someone else, when you can barely care for yourself, is daunting. We do the right thing because we feel like we don’t have a choice, but we also lament at the loss of our own wellbeing during those periods of time. I know I’ve pushed myself past the breaking point with my ex because I thought I needed to. For him. For my spouse. I did it for someone I stopped loving, out of a sense of duty, so of course I’d be on the first flight if need be, for my Nana.

I try not to dwell on these things. Both my Nana and my dad are doing well, though the harsh winter takes its toll. It’s just hard approaching the one year anniversary, and staring at palm trees. I am where I need to be, for myself, for my physical and mental well being, but it doesn’t mean I don’t have moments of guilt because of it.


Your Health vs. My Health. vs. The Right Thing to Do