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!

Not a Flare

Warning: Poop talk ahead

Okay, so I’ve been miserable for several weeks, and there has been some discussion regarding the potential need to increase my Humira. There was also concern that I was suffering from C.diff colitis, only now I’m in the same place I was this same time last year, painfully constipated. I actually was obstructed, but the E.R. in my small town was inundated with influenza cases. They didn’t even order an x-ray despite the fact I was screaming in pain, couldn’t even pass urine, and was only having leakage from my rectum. The doctor did a rectal exam, announced I only had an impaction, and told me to go to a drug store, get gloves, an enema kit, and laxatives, and go home to manually extract it myself. Yes, that’s what you think it is, but in case you’re not thinking it: he wanted me to put gloves on, reach into my own ass, and pull out the fecal matter that was “impacted.”

I later talked to my G.I. doctor, who was outraged to hear just how much was stool was involved. He confirmed that it was more likely that I had an obstruction, but that with all the laxatives, enemas, and my willingness to stick my entire hand (past my wrist) into my own ass, I had managed to pass it all. Apparently I was lucky I didn’t suffer an intestinal rupture, as laxatives were not indicated given the severity of obstruction symptoms I had.

So, here I sit, constipated and annoyed with life, treating my symptoms conservatively because I have passed some stool, and I’ve been eating relatively little, when a new fun symptom emerges. I had been hesitant about the antibiotics just because I don’t, as a rule, like to take them unless proven necessary. I’ve had a lot of allergic reactions, and I harbor some nasty microorganisms as a result of repeat exposure due to infection. That being said, I recognized that I could very well have a decent amount of C.diff in my system, and if that were the case, a course of Flagyl seemed appropriate. I didn’t get nauseas or miserable after the first two doses…but I was really itchy, something I attributed to a different medication I was taking, Sucralose.

Yesterday the numbness I’d been noticing in my top lip went from mildly annoying, to incredibly severe. I looked in the mirror and was shocked to notice I suddenly had a very plump pout. I used to think I wanted lip fillers…then this happened and I realize I would just look ridiculous. Unsure as to whether it was the Flagyl or the Sucralose, I decided to discontinue the more likely culprit, the Flagyl, and go from there. Once I’d been free from the Flagyl for 24 hours, the numbness decreased, and no further swelling occurred, but clearly damage was done.

Today I noticed, despite using chapstick, my lip was peeling. It wasn’t just flaky in places, it was literally sloughing off, on the outside and the inside. My gums and the inside of my lips were so raw they were bleeding. I was on the phone with a friend and after 30 or so minutes of talking I tasted something metallic, I spit, and realized my lips, and gums, were bleeding. Food and even water burn my mouth violently now. I’m able to tolerate some Italian ice, but even that is difficult.

I’ve had flares, but this is something much worse, and I’m concerned I may have Steven Johnson Syndrome. This happened years ago, with Augmentin, but the doctors weren’t sure whether or not it was SJS because I was later diagnosed with Behcet’s. I tended to err on the side of being reasonable…both conditions are rare…what were the odds I’d have both. Now, as I confront my scalded mouth, I have to wonder if I really did have SJS, and I’m just that lucky. I also have to wonder if the worsening abdominal pain, mucous, and bleeding, are from the constipation, potential C.diff, or if Steven Johnson Syndrome is eating my intestines.

There is stress in my life, too, and I recognize that can trigger a flare, but I don’t have any telltale ulcers, at least not externally, and while the pain is similar, the presentation isn’t. I tell myself I need to reduce stress, but the things that make me happy also make me stressed, so it’s a fine line between satisfying wants and needs, and slowly killing myself in the process.

When you have an autoimmune condition you go through periods of denial. I have a friend who had a kidney transplant in her teens, and admits that she didn’t initially take the best care of herself post-transplant. She still had the disease that damaged her first pair of kidneys, but there is this young invincible attitude which overcame her. For me it was different. I started having noticeable symptoms around age 20, but life was complicated for me at that time, and I was able to sort of deal with the ones that bothered me, and shelve the ones that didn’t. As my condition progressed, and my life semi-stabilized, I was able to accept there was something wrong, and attack the issues as they arose.

But it was never holistically.

I always attacked symptoms. When my issue was nausea, and they found my gallbladder was basically failing, I turned my sights on the fatigue. When they told me there wasn’t much they could do for that, I attacked the joint pain. I catch myself doing the same thing now, even though I have a systemic diagnosis. It’s kind of hard not to. With Behcet’s your main doctor is a rheumatologist, but you still have a primary care doctor who handles your random infections. Those random infections may or may not be Behcet’s related. (My bronchitis for example was inflammatory, possibly viral, which means it could have been related to the Behcet’s…or not.) I also have a neurologist, and need to find a gastroenterologist, urologist, and potentially a nephrologist. Probably wouldn’t hurt to toss in a cardiologist, despite my 72-hour EKG results having been normal-ish.

So here I sit, my mouth burning, wondering if I have Steven Johnson Syndrome, or some random drug side effect, but knowing that I’ll probably have to talk to a handful of doctors to sort it out. I still need to see a GI specialist, and at some point a nutritionist now that I think about it…

The point is, nothing is simple when you struggle with a chronic condition. I’m realizing I need to stop denying the totality of my battle with Behcet’s. Even when my symptoms are managed, I still have the disease. I can live my life, but I need to also acknowledge the things in my life that can flare my condition. Stress, lack of sleep, various medications, all of those things and more, can cause a flare.

Now…how do I actually apply this knowledge without not living my life?

Fun little conundrum right?

Not a Flare


I’ve been struggling with depression and anxiety lately. It sneaks up on me, and is triggered by the most random things. I know a huge part of it is my fear that I’m unloveable. My whole life has been spent caring for others, family, my ex-husband when we were married, and friends, they all came first. Now that I’m single, I’m forced to face myself, and it’s uncomfortable.

My low self-esteem comes from my ex-husband, and his abusive ways, but there is more to it than that. I see my body, and I see where I’ve been marred. Some stretch marks, marks sexual partners don’t notice, but that I do. Marks from steroid induced weight fluctuation. Ulcerations that are healing, but still evident. I have muscle loss from the inability to eat enough lately, and today I spent a while playing with the small amount of extra skin on my breasts. They’re not saggy, they’re still big and full, but I find myself fixated on the parts that have changed that I hate.

I don’t hate myself, I hate Behcet’s, and while I am not my disease, I do have it. It’s this vicious circle of wondering about who I am, and who I can actually be. Then something negative happens, and I think about what I want to do, but instead, I’m sucked into a world of negative self introspection.

“Who is going to love someone as sick as you?”

Those were my ex-husband’s parting words to me. They hurt because I’d already wondered the same thing about myself. Who could love someone like me? Could I love myself?

Loving myself is a work in progress. Physically I don’t love how I look. Emotionally I know I’m a giving person. I’m kind and caring, and my friends are lucky to have me in their lives. I just wonder if that offsets Behcet’s.

My rheumatologist and primary care doctor are now working together to rework my medications. I’m most likely going to start taking my Humira weekly. I’ve already been switched from one antacid to another, because they strongly suspect I have C.diff colitis. Other medications will also be adjusted accordingly. Nobody seems to be big on medical marijuana, but I need to keep it as an option.

Life has been throwing curve balls at me at breakneck speed, and they’ve all hit me…hard. Whatever happens, I’m determined to land on my feet, I just worry that in the end I’ll be alone. I think that’s my ultimate fear. So much of my life has been focused on helping and supporting others, I didn’t realize how much I craved the companionship of another person. I will always help the people around me, it’s who I am, I just worry that I’ll end up helpful but alone.

Today wasn’t a great day. My stomach is a mess, not from anxiety but from the inflammation and infection, and I may have lost my work from home job which is unfortunate. I can start my other job soon, and I have an interview in the morning for a clerical position, it’s just concerning. Working from home has afforded me flexibility when I’m sick, I know losing that job will mean losing that flexibility.



Down With the Sickness

So the last time I checked in I was talking about the difficulty of dating when you have a chronic illness, and of course the decision to inject Humira when you potentially have an active infection. I did have a viral infection, however, the bronchitis I had was more the result of inflammation than the virus. I refused to take the antibiotics, instead opting for steroids, but that wasn’t the end of the story.

I had a stomach issue back on the 7th, and by issue I mean one bought of diarrhea, followed by cramps and nausea.I felt better, and the guy I’m seeing came over, but ultimately I started feeling sick again and he left. By Monday the 8th I was feeling better, but he was having issues. I thought about it but I didn’t feel like I had an infection, at least not your standard infection, and neither did he. I spent the week terrified I was getting sick, and hardly hearing from him. Then I found out he had diverticulitis and abscesses. He dodges surgery, and wasn’t contagious, so I did the irresponsible thing, and visited him in the hospital.

Okay, so I was responsible about it. He had a private room, and I wore a mask until I got into the room (he wasn’t contagious anyhow). When he got out of the hospital after a few days, he invited me over. It was the 14th, and I was depressed. Not because it was Valentine’s Day, I don’t as a rule recognize that holiday, I was just having issues with my family, and with life in general. (The ex wasn’t making any of that easier.)

Monday the 15th I felt fine leaving his place. I hadn’t had an appetite, which was something I hadn’t experienced for nearly two weeks! I went home and ate some vegan, gluten free, Pad Thai, a safe food for me, and some coconut chips. Now, because of the issue on the 7th, I hadn’t really had a good bowel movement. I’d gone once or twice, they were odd, and bloody, but I wasn’t concerned because that’s not abnormal for me. Well, TMI, but within 20 minutes of eating, I had to rush to the bathroom, and I didn’t make it. I told myself it was just too much fiber, but the pain was excruciating. After several rounds of diarrhea, I downed some extra strength medication, and made my way to the living room. By now I was dehydrated. I hadn’t eaten much for several days, and had even lost the urge to drink, but had been forcing myself to at least try. The worst part was that even water burned going through my system.

I ended up having to call 911 because I started to black out. My blood pressure was high, until I stood up then it plummeted, while my pulse did the reverse. I don’t remember much in terms of getting to the ambulance, I know they carried me down stairs in a special chair. I remember even less once I got to the ER. I was told later that I’d had two seizures. Without even seeing the doctor a second time, I don’t remember even talking to him the first time, I was being told I was being discharged. My abdominal CT was normal, despite my pain, as was my urine and blood testing. I explained that I wouldn’t be able to drink water at home and would just end up coming back in, but they refused to admit me.

Later I found out that my urine tested positive for THC. I had smoked the night before in an attempt to spur my appetite or at least my urge to drink water (it did make me thirsty thankfully), and I explained to my doctor, who was annoyed upon seeing the results, hat I had recently begun occasionally using marijuana, with a medical card, to try and spur my appetite and thirst. From there it was a total wreck. My doctor wouldn’t stand behind admitting me to the military facility (which is the only hospital I can be admitted to anyhow) but did a least have a theory for what was wrong with me. He suspects based on low grade fever, symptoms, and recent series of infections, that I have C.diff colitis.

Initially I argued with him. I only had a couple instances of diarrhea…but he reminded me that I’m chronically constipated. Also, I took medication to stop both instances, but had pain and nausea, and all the other symptoms between bouts. Of course this infection, caused my antibiotics, requires more antibiotics. (Joy.) It’s super contagious, but I told the guy I’m seeing it isn’t because really, unless he’s sticking his hands in my butt (he’s not) he’ll be fine. I wash my hands constantly. Until I finish the antibiotics, the bathroom gets cleaned with bleach, too.

Today the fever was down, so I’m going to go ahead and inject my humira tonight. My rheumatologist said if I notice an improvement in symptoms associated with that, she’s ready to push the insurance to cover weekly injections, but she may still have me do every 10-12 days to start out. The theory on her side (and my primary care doctor’s) is that I likely have ulcerations  in my intestines, colon, and rectum. I know I’ve had rectal ulcers before, but the doctor wouldn’t say they were definitely Behcet’s because I’d suffered an impaction a week prior to the exam. (Lame. Nobody will call anything Behcet’s because you can’t test for it. I have it. Deal with it!)

The guy handled sick me well, though I fear I’m making a bad impression. I suppose he did spend several days in the hospital and nearly need surgery, and they did tell him he will likely suffer a recurrence of this in the future, but it’s definitely a different thing. It was odd being on the other side of the hospital curtain though. I brought him an extra fuzzy blanket because I know how scratchy the hospital blankets can be. I also talked him through what the various abbreviations meant, and how his diet would be managed. When he asked how I knew so much, I shrugged, “A combination of personal experience, and work experience,” was the reply.

For what it’s worth, dating someone with an illness can work out for you, too, even if you’re just casually “dating” or you know, whatever…

I always say life is what you make it, but sometimes I forget how hard it is to be sick. When I have periods of being well, I get complacent. Being sick and single is a whole new thing to try and work through. This feeling that, no matter how kind and good I am, it won’t be enough to overcome the reality of my illness.

Down With the Sickness

Injecting Humira When You’re Sick

So I have an interesting dilemma because I have a weird body quirk. I don’t get fevers. Seriously. I’ve only had a handful over the last ten years, once when I had the flu, and then one random one when I first started humira. My body temperature hangs around 97.3 though, so “normal” for me, is low. If I’m at 98.6 that’s like most people being at 99.6(ish). The highest fever I’ve had in the last few years is just over 100, but again, that’s not a great reading given my usual temperature. The odd part, is sometimes, when I’m really sick, my temperature will drop. The other day I felt horrid, and my temperature was 96.3…accurately.

In any event, the general rule of thumb per my doctors has been not to inject Humira if I’ve got a fever. I never get fevers though. After two confirmed kidney infections, without fever, the rules changed. I was told not to inject if I was sick. That, my friends, is a huge game changer.

See, who defines “sick”? Obviously if I have a UTI, I’m aware of the symptoms, but other illness warnings signs aren’t so concrete. I know I have bronchitis, my inability to exchange air tells me that, but my huge swollen lymph nodes? The could be from the bug, or they could be due to the sores that have begun to crop up in the back of my throat. Of course those sores could be irritation from coughing, not Behcet’s lesions.

Tricky right?

I was supposed to inject Tuesday, but I’ve been wanting to go back to a Sunday injection day anyhow, so I waited. Last night (Saturday I know but close enough) I finally sucked it up and injected. By that point my glands were so swollen I was struggling to swallow my other medications. Every time I swallow I swear my eardrum is going to rupture. Yeah, I’m on inhaled steroids (I stopped the oral ones) but I’m not taking the antibiotics because I’m convinced it’s viral.

Only now I’ve injected…impairing my immune system…and immune system that is already bogged down with this bronchitis.

My doctor is somewhat afraid of me, and prefers me to be on antibiotics if I’m going to inject while I’m not feeling well. I get his point, but I also have a problem tolerating antibiotics. My allergy list is a mile long, and while I’m not allergic to Azithromycin, I do have a history of sinus tachycardia. I’m terrified it’ll do something nasty to my heart, on top of the other antibiotic symptoms I always get. (Nausea, diarrhea, all that fun stuff.) I get that my allergy list is giant, but I tolerate IM injections of antibiotics well, so I wish we could just bypass the oral route with me and go straight to a few Rocephin injections.

It isn’t a paranoia thing, either. I know the risk is relatively small, however the more drugs you’re on, the higher your risk of interactions becomes, and I’m on a LOT of drugs. Hell, a few of the meds I am on I have to remember not to take too close together, for cardiac reasons.

So yeah, I injected last night, because I’m starting to flare, and I’m at the point where I’m not sure if I’m sick, flaring, or both, though the last option seems most likely.

I wish someone would just cuddle me and rub my back 😦

Shit, I’m actually needy sick…this is rare…

Injecting Humira When You’re Sick

Spooning with a Spoonie: Dating with Diseases?

Alliteration is awesome. (See what I almost did there?)


Okay…so the last blog I talked a little about the “guy,” and I wanted to get into an awkward subject that I didn’t initially intend on discussing but have since decided I want to cover.

My marriage ended a long time ago, but we stayed together for almost three years after I knew it was over because part of me thought we could resurrect it. The verbal and emotional abuse was horrible, and honestly I’m glad I got out. When things officially ended in July, I started talking to the guy I’m currently seeing, but it was a casual and odd meeting. We initially met on Tinder (insert opinion here) but I accidentally deleted him, and ended up reconnecting with him via Craigslist’s “Missed Connections” section. (Yes, I know that sounds creepy. It definitely felt like a Lifetime movie, and not one of the sappy love stories. It was more like, “girl ends up hacked to bits in a garbage bag.”) In any event, he’s not a serial killer, that I know of, so it all worked out.

I had a few flings, because having married my high school sweetheart I hadn’t been with anyone else. Those flings taught me a few tough lessons. The first guy was sweet, but terrible in bed. It was like tearing off a Band-Aid. I fooled around with a younger guy, but didn’t sleep with him. I did, however, get extremely sick afterwards. Then I drove across the country, alone, inciting a terrible flare. Where was I meeting these guys? Tinder. Obviously. I was newly single, and happy that apps existed, because I’m nerdy and socially awkward. I was till emailing “the guy” but I actually liked him, so I didn’t want to meet up with him just yet. My goal was super casual, nobody I could catch feelings for.

When I got to California I met a guy who I thought would be the perfect casual hookup, unfortunately he was such a jerk it didn’t work out for long. Worse? He took the condom off without telling me, and wasn’t careful in certain positions, leaving me with a UTI that turned into a kidney infection Luckily nothing was sexually transmitted, but safe to say I kicked him to the curb after just a few nights of fun. I went to lunch with “the guy,” while sick, but didn’t hear from him for a while so I figured, like most of my dates, he wasn’t actually interested in me.

The third guy was someone who would have made a better friend. At this point I didn’t know Netflix and Chill was a thing, but because I actually asked him to come hang out and watch Netflix and chill…I learned. It’s not that I wouldn’t, in theory, sleep with him again, I just don’t want to jump him the way I do “the guy”. Truth? I had a bad date that night, and then Netflix and Chill guy sort of fell into my evening. Shortly after that I met up with “the Guy” after asking him via text if there was something I did wrong during our lunch. Turned out he was interested but thought I wasn’t. We both have this self doubt thing. I met up with him without intending to sleep with him, but alas, he’s hot, and smells amazing, and yeah things just happen!

This was at the beginning of September, and I haven’t gone out with or slept with anyone else since then. Initially my exclusivity thing was more my preference on sex. I’d been with one person, only, for so long, that I felt like I couldn’t manage juggling sex. Sure, it’d make avoiding feelings easier, and Netflix and Chill guy was still in the picture initially, but ultimately I couldn’t bring myself to do it. Soon after that I realized another added risk of multiple partners, beyond STD’s…regular old illnesses.

Here’s the thing about dating someone with a compromised immune system: you may not get sick, but we will. If I was juggling two men, who were also juggling however many women, who were also juggling however many men…you get the picture…I’m theoretically being exposed to more germs than I can care to even think about. While I take precautions in my day-to-day life, I can’t micromanage the men I sleep with. Still, I found myself wondering just how much I was exposing myself to.

We’ve only been out on one actual date-like scenario, and it was bowling. Now, I love bowling. I wanted to go bowling. I pretty much begged him to go bowling. What I hadn’t realized was how little he’d care about the plethora of germs in a bowling alley. Seriously…pause and think about how many people have shoved their fingers into that bowling ball? Yup. Gross. He refused hand sanitizer, and not wanting to press the issue and be that spoonie, I let it go.

Big mistake. 

We went back to his apartment and jumped right into foreplay and sex. The thing is, there are sexual positions you have to be careful of, too. Everyone has bacteria in their bodies and on their bodies. The problem with a spoonie who is sick a lot, is that we get some nasty bacteria colonizing our guts, or at least we can. In my case, the E.coli in my intestines has been beaten down by years of antibiotics. Now the only strains left are super resistant. I’m a big believer in butts are exit doors only, which is more because I’ve dealt with GI issues, and I don’t like things going up there, but I also don’t like things going near there, because that’s where my kidney infections likely start. When I get stomach bugs involving diarrhea, I 100% of the time, no matter how careful I am, get a UTI and kidney infection.

So, between the dirty bowling balls, and some careless sexual positioning, I find myself with a raging UTI just a few days later. He panics because by this point we’ve stopped using condoms, and I guess maybe he jumped immediately to me having an STD. I had to reassure him that I’m prone to infections, and these happen to be one of the annoying types I get.

So how do you spoon with a spoonie? I guess it depends on the spoonie. I would like for “the guy” and I to be exclusive. The reasons are complex, and simple. First off, we’ve been seeing each other casually since the beginning of September, and I’ve been led to believe exclusively on his part since at least early December. He’s hesitant to make it official because he thinks things will change, but the only real change will be that I can relax. Our current agreement is simply that if he sleeps with someone else, we use condoms again, to protect me…but that’s not really the main concern I have.

If he’s sleeping with, or going out with, other women, he’s being exposed to germs that he could then, in theory, bring back to me. Sure, I like him, and the thought of him going on dates (when we don’t even go on dates) or sleeping with, other women, makes me nauseas…but my expectations are totally in check. What we’ve got is casual. It works. I just want to tweak it for my sanity and safety.

Eventually I need to talk to him about a few things, and it’s odd because we’ve had more intimate conversations, but I still struggle. The other night we had brief, but way too detailed, conversation about the IUD I have versus the pill I was on when we first got together, and whether my periods were regular. (Yeah, that question was raised.) I get his fears, a lot of chicks use the pregnancy thing to trap guys, or whatever, but getting pregnant isn’t an option for me. A handful of my drugs carry huge risks, and my neurologist refused to prescribe me Keppra unless I was abstinent or got an IUD. True story. Still, all these conversations circle around sex. My issues are non sexual.

When we go out to grab him some food quickly, he’ll come home and just sit down and eat. When we fool around, there isn’t hand washing before hand, which I recognize as a big risk every single time, yet I say nothing. I took care of him when he was sick, foolishly thinking I could avoid the cold, even though I had just injected my Humira the day before. I rarely get colds, but alas, here I am having spent most of the week in and out of doctor’s offices and the ER. He took care of me when my kidney infection hit, but I worry the more he sees me sick, the more likely he is to see me as sick.

There is a difference between getting sick and being sick chronically

Yes. There is. The things I’ve learned to live with, are truly weird for someone to process. I can’t eat gluten, dairy, alcohol, or anything high in fiber. In fact, I can’t eat more than a handful of food at a time, unless I plan on getting pretty sick to my stomach. I’ve actually had to utter the phrase, “We can go out to eat, or we can have sex, but we can’t do both.” (Not with “the guy” but with my ex.) Last week I spent three nights at “the guy’s” place, and had to worry on the third night because that was when I started feeling sick. I was terrified that I’d truly get ill, and he’d have to wake up and take care of me.

I hate being taken care of.

Yes, you read that correctly. Drop of my supplies, and move along…at least 90% of the time. The other 10% I want to be cuddled until I pass out. It basically hinges on nausea. If I’m nauseas, leave me alone, if I’m not, let’s cuddle. If I’m feverish or super tired, back off….it’s all over the place.

I like “the guy,” but I’m not eager to push things towards a title, or meeting the family, or any of the actual relationship steps, because I’m also me. I know I’m a good person, and that I bring a lot to the table…but I also bring chronic illness to the table, too. It’s hard to reconcile who I am, because most of who I am is amazing, but the rest of it, the stuff I can’t control, often feels like it overshadows the good stuff.

It isn’t like I can say, “Hey, if you’re banging a lot of other chicks, let me know, my immune system can’t handle it during cold and flu season, especially with the stomach bug in circulation,” but then again I haven’t gotten the nerve to say much of anything regarding safety and my health. It shouldn’t be that hard to ask a guy to wash his hands…especially after months of sex, and in depth conversations about birth control. So why is it?

Because I don’t want to be “sick”.

Chronic illness is chronically annoying. You feel different, constantly, because YOU ARE. Yeah, I said it. It’s not bad, it’s not good, it just is. We can pretend that we’re just like everyone else, but at the end of the day there are limitations, medications, and expectations. I have failed to meet expectations in my life many times because of my illness. There is nothing worse than feeling like a failure when the circumstances were beyond your control. I think that’s why I’ve tried to be so clear that nothing else would change if we became exclusive, unless he wanted it to. It would be a conversation if either one of us wanted to change the terms. Plus it wouldn’t have to be permanent. We could try it out, and if it didn’t work, we could figure it out from there. He’s a great guy, and honestly I’d find a way to stuff my feelings, or at least get over them, to keep him in my life as a friend.

The irony is I’m a spoonie, a term he doesn’t know, and he loves to spoon. Every time he asks me to be the big spoon or little spoon I have to smile, but I also pause and think about how much he doesn’t know about my illness. How long can I hide behind acting fine? It’s funny because he’s worried I’m going to want more from him than what we have now, if we become exclusive, and while I liked seeing him three times last week, I also worry that if he decided he wanted more, I couldn’t live up to his expectations.

Funny how we’re both terrified of failing to meet expectations, for our own reasons, and yet what we want seems to be the same!

At some point I need to have the hand hygiene talk I suppose. He’s a science guy, so he’ll get it, but it’s never easy talking about being someone who has a chronic disease, especially with someone you’re casually dating. Having Behcet’s and dating makes me feel like I’m running the same dating marathon everyone else is running, only I’m starting a mile or two behind, and I’ve got my hands tied behind my back.

Spooning with a Spoonie: Dating with Diseases?

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