Lungs?

Around the time I started having symptoms of an autoimmune disorder, I also started having symptoms that seemed to be asthma-like. I didn’t have asthma attacks, at least not ones that were so severe I had to be rushed to a hospital, but I definitely had moments where breathing was more than a little difficult. I noticed working out, or in the cold, I would not only have the familiar tightness in my lungs, but this hollow/cold/deep pain, in the middle of my chest. A few friends with asthma suggested I talk to my doctor because that was something they related to and felt could indicate that I had asthma.

I went and saw a sketchy pulmonologist, who did the workup for asthma, and was less than impressed with the results of my testing. (Personally I blame the technician who did the testing, but I guess since it’s been 9 years I should let it go and get a second opinion.) During the test my baseline lung function, including capacity, and then gave me a drug that would make it hard to breathe (methacholine challenge.) The problem was that the technician was getting frustrated with me because my baseline levels were so low, theoretically moving forward with the challenge was pointless. She accused me, repeatedly, of not inhaling all the way, or exhaling all the way. I assured her, after being forced to repeat the initial stages of testing, that I was doing everything I could to get to the damn baseline so they could do the challenge. Despite not hitting the target, they went ahead and gave me the drug, which made me feel like I was dying. Seriously, I wanted to scream, or panic, or do anything but breathe into the machine, because it felt that tight. Again I was accused of not trying. This was asinine. I wanted to breathe more than anything, and here this woman was, saying I wasn’t trying? Woman, I am trying to breathe deeper than I have ever tried to breathe before!

The results were, as you can probably guess…inconclusive. Why? I didn’t meet the baseline requirements for testing. My lung capacity was too low to get an accurate reading for the challenge, or for anything else they did that day. I basically wasted several hours being tortured. I was given a tentative diagnosis, “maybe you have exercise induced asthma,” and sent on my way with some inhalers. Over the years I’ve just gone with that diagnosis, despite worsening symptoms that have suggested something more is going on. I’ve used my inhalers, when I work out, and when I don’t, because sometimes I’m just too short of breath to function. Twice now I’ve been told I have asthmatic bronchitis…without actually being diagnosed with asthma. (Wrap the ridiculousness of that thought around your brain.) There was no infection, just inflammation, and lots of it, making me and air enemies.

From what I’ve read, organ involvement in Behcet’s isn’t very common, but in my instance I’m starting to think that more vessels are involved than previously thought. For starters, there is a big question regarding my kidneys. I get a lot of infections, but in between infections I also get bouts of proteinuria, hematuria, and other random signs that my kidneys aren’t always playing nice. I have signs of brain involvement, though no neurologists has felt comfortable lumping the headaches, balance issues, and seizures into the Behcet’s diagnosis, I’m confident that Behcet’s is to blame. My symptoms have lessened with Humira and steroids in the picture, which to me is a huge sign that something autoimmune is happening there. Lung involvement though? That seems to be insanely rare.

My lung capacity sucks. I can’t hold my breath underwater. I rarely get colds, which is spectacular, but when I do, it almost always settles into a lung or two. It’s not that I get pneumonia, I just don’t get your traditional nasty throaty cough and all that stuff. I feel the mucous, in my lung, but it just hangs out there till I can clear it through lots of steamy showers and mucous thinners. When I’ve been hospitalized and they bring the breathing toy to me, I always roll my eyes. I suck at that thing. I can’t get the ball to stay where it’s supposed to stay, and if I can for a few seconds, I’m near passing out.

How do you do things then?!

Okay, here’s the scoop on things I like to do, that involve breathing more, and how I try and make it work. It’s not as easy as using my inhaler! For some things, like walking the dog, I can bring my inhaler, and use it if I need to. When I lived in New York, even just letting him outside during the winter meant using my inhaler, but now that I’m in California, it’s rarely cold enough to trigger my need to use it. Longer walks here may require its use, but in general I try and struggle through if my heart rate is elevated. Why? Well, I have sinus tachycardia, which isn’t unsafe, just uncomfortable. Sometimes my heart rate likes to shoot up, and with some activities you want elevated heart rates. Exercise is one of those things, and walking my dog should get me elevated slightly. However, the steroids in my inhaler also cause my heart to race, and that is an uncomfortable feeling. If I’m already elevated, and use my inhaler, then it can become a big problem. I can even get light headed. Normally if I’m planning on taking a longer walk with him, I use my inhaler a while before, if I’m feeling constricted or if it’s cooler out, and then wait for the heart rushing portion to stop before we head out.

Warning: Sex Talk Below

Yes, sex, the other activity I enjoy that gets my heart rate elevated. The issue with this is that it isn’t just activity that makes your heart race when you’re having sex! You’re probably attracted to the person, and excited, and those two factors alone are going to elevate your heart rate. I try not to use my inhaler before or during sex, though if I need to use it earlier in the evening because I’ve vaped some marijuana, then sometimes it isn’t a big deal.

(I realize there will be people who think I shouldn’t be vaporizing marijuana when I have lung issues, however, I also have huge issues with appetite and other symptoms that outweigh the concerns. I purchased a high quality vaporizer to minimize the damage, and I never use my inhaler before smoking, because although that could theoretically get more marijuana into my system by increasing my lung capacity briefly, I want to be cautious about my lungs. I cannot, at this point, handle edibles due to my digestive issues, but maybe in the future that’ll be more common. I also don’t smoke daily, I may smoke 1-2 times in a week, then not at all for a week or two, it really just depends.)

Anyhow! Yes, I’ve had to use my inhaler during sex. It’s not the most glamorous thing in the world, but I’ve been lucky. I haven’t been with that many people, but I’d say the break down is that most don’t care. I’ve had some feel flattered that I needed to use it (I don’t explain to them that it’s my lungs not their performance…because if I’m breathing that hard I’m probably the one working haha), others look at me like I’m a nerd (small minority), and a guy who shares with me. Seriously. Nerdy, all out, hot sex, where you both need to pause and use an inhaler? It’s a win for all involved. The clear drawback is the heart rate issue. Depending on the partner (and the sex) my heart rate may already be up, or may elevate further during the deed, so I have to be able to express my needs.

There is nothing wrong with taking a time-out, or swapping positions so you’re doing less of the work.

Obviously if you’ve both hit the inhaler the above statement is kind of comical, but I guess that just depends on who is more winded, and more affected by the steroid rush 🙂 Usually it’s me, since I have the pre-existing tendency towards tachycardia.

Ideally I use it after sex, if needed, and that tends to be the way things usually go, especially with the guy who shares it with me. Sometimes we use it mid-sex, and take a breather (pun totally intended) but that’s when it’s a real marathon session, so hey, everyone is winning in that scenario!

I’m talking to my doctor on Monday about some lung pain I’ve been having, to see if perhaps it’s time to revisit pulmonology. Personally I think it is, and I don’t need a referral, but I want his take on things, and who he would recommend seeing. I’m okay if I’m just one of those people with crappy lung capacity, but it would be nice to know that it’s not getting worse, and that something else isn’t going on. I’d also like the option of owning a nebulizer for the times when it’s really hard to breathe and I’m taking 4-5 showers a day, more if my hot water tank can recover, just to relax.

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Lungs?

Don’t Ignore Your Service Dog

So I’ve been casually seeing this guy, and when I spend the night I don’t always stay on top of grabbing something to eat in the mornings, or before bed. Lately I haven’t had an appetite at all, and since I haven’t been on steroids, the weight has been coming off massively. I didn’t really realize how little I was eating until recently, because honestly I haven’t been hungry. I was heavier than I wanted to be, and I’m at a nice weight right now, so it’s not like I’m unhappy with the weight I’m at, it’s just scary that I got here the way that I did, and it’s scary to know that I will continue to lose weight (rapidly) if I don’t eat more.

Anyhow, there are a lot of problems when you have no appetite, and an autoimmune disorder that makes you nauseas. First off, I have seizures, and while my medication works, if I’m not sleeping well, or eating well, I’m putting myself at risk for seizing. After two abysmal nights of sleep I was pleased that I at least got better sleep over the guy’s place than I had been at home the prior nights. Still, I’d eaten a whopping 400 calories for the entire day, and while I had noshed on a few potato chips at his place, it probably only got me to around 600, less if you consider calories burned.

I didn’t get home until almost noon today, which was later than I’d wanted. I was tired, and kind of hungry, but I had a ton of stuff to do for work, so I threw myself into working without even changing out of my clothes into something comfortable. I knew I wanted caffeine, but didn’t even stop to get my caffeine fix. My mind was on work…except my dog.

When I got PTSD 9 years ago, my dog stepped up in a big way. He learned to stop panic attacks, motivate depressed me out of bed, and check doors and windows if I was feeling twitchy. He also began to alert in the last few years to rapid heart rates associated with black outs, as well as begin to act funny during my pre-seizure auras. In the last few weeks I’ve noticed something else he’s on top of…low blood sugar.

So, as I sat there, trying desperately to get my work done, my dog was nudging my hand, whining, and licking my hands. I thought maybe he wanted me to move to the couch, but that didn’t do anything, in fact, me moving made it worse. I stopped what I was doing and did a body check. I wasn’t having an aura, so I knew I wasn’t going to seize unless I was about to have one totally random seizure which *knock on wood* has never happened to me. That’s when I realized it was pushing 12:30, and I hadn’t eaten more than a couple potato chips in over 12 hours. The last time I ate before that had been 12 hours before. In total, that was about 600 calories in 24-hours, with physical activity. I took stock of how I felt and realized I was kind of dizzy. I felt a little drunk, and confused, and was working slower than usual.

I ate a granola bar, with protein, and drank some vitamin water. I rapidly felt better, albeit nauseas because I wasn’t hungry but needed to eat. The dog, satisfied with himself, curled up under the blanket and slept while I finished my work.

People see me, and they’ll say, “you don’t look sick,” unless I’m flaring of course. (That’s when I’m told I look like death.) They see my little dachshund and wonder how he could possibly be a service dog…but he is. I need to remember he’s more in tune with me than I am sometimes, most of the time in fact, and I need to trust him to alert me to things I may not notice on my own.

I’ve been accused recently of having an eating disorder. Just because I’m glad that I’ve lost steroid weight, doesn’t mean I have an eating disorder. There is a huge difference between having an issue with food because your body doesn’t process it well, and wanting to be thin so you ignore the hunger. I rarely get hungry, and even when I’m hungry, I can only usually eat half of whatever it is I try and eat. I know I have that blocked celiac artery, and I’m sure it’s more blocked than the doctors think, because if it’s 60% blocked all the time, it must be more blocked when the vessels swell.

In any event, I feel like digestive garbage. Food doesn’t have pleasure for me. Lactose, gluten, alcohol, meat, and anything high in fiber? Yeah all of  that is out. I used to love salads. Now it’s a few bites and I’m in excruciating abdominal pain. Doctors push fiber so I can be regular, but anything with too much fiber and I’m doubled over and need prescription strength Imodium. This balancing act becomes such a pain that you double up on vitamins, and live off of bland foods because it’s the only way you can survive. I can eat like a normal person, or live like a normal person, but I can’t do both. I would love to eat at restaurants. Go on dates with guys and not have to explain why I’m only having a Sprite.

Anxiety obviously makes it worse, and I’ll admit that I do have IBS. My GI issues aren’t all Behcet’s related, though the bleeding isn’t necessarily a common thing in IBS patients. Still, the level of GI issues I battle? It’s intense.

So yes…I’m wearing smaller jeans. Half of my Facebook feed is congratulating me on the weight loss, while the other half is concerned. Me? I’m just glad my dog noticed my low blood sugar before my friend and I took off to buy new jeans. Passing out from low blood sugar is a drag. Seizing from it is worse. Doing either of those things at a crowded outlet mall by the California/Mexico border? Not ideal.

Apparently I should really be considering medical marijuana as a more regular thing instead of an occasional thing. I guess I’m still thinking about it as a drug drug, instead of a medication. It would be nice to be in a better mood, and have an appetite!

Don’t Ignore Your Service Dog

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

Wait, My Weight?

Okay, so for years I was tall and skinny, and I didn’t know I was skinny because like most teenagers I thought I was somehow chubby. I was 5’10”, and 128 pounds, yet I thought I could tone up. Whatever.

Adulthood came, and my weight was around 140, and I was content. I was slim, I wanted to be toned, but things fit me fine, and I was good. Over the years, my weight fluctuated, but that happens, I hit 25, and by then I was around 150, which for my height wasn’t terrible. And then the medication parade began. One sleeping medication made me go up to 170, when I stopped taking it, and ate healthy and exercised for a friends wedding, I got down to 135 pounds. I was happy, in shape, and things were good. Until the steroids began.

Here is the thing about me and prednisone or medrol dose packs…I don’t get hungrier. I don’t want to eat more, in fact, I have to force myself to eat…but I still gain weight. Then when I stop the steroids, my hunger comes back with a vengeance. By May 2015, I was 190, the heaviest I’d ever been. The winter had destroyed me with multiple steroid runs, and living in the middle of the woods in upstate New York hadn’t helped me stay active. I began to eat healthy and started to lose weight, but it was slow going. Then I had a seizure. Starting Keppra was like going on a cleanse, I wasn’t hungry, but I couldn’t stop having diarrhea. Everything I managed to consume, immediately exited my body with a vengeance. Soon I’d dropped to 175 pounds. It was around this time that my husband and I officially decided to separate, and I took on the stress of deciding to move across the country. The weight was coming off, but I wasn’t really thinking about it. I was eating when I was hungry. What was the hurt? I’d put on weight, I could stand to take it off.

Doctors appointments in California were always annoying. I was weighed routinely and hated the number. I wanted to be back around 150, at least, ideally 140, but no lighter. I was happy as long as I looked toned. My goal wasn’t the number on the scale so much as how I felt. Whenever steroids were mentioned I cringed. What would happen to my body? It all felt so unpredictable. I insisted on only taking them as needed, and refused new sleeping medications with any sleep related side effects. I would sort this out somehow, but my weight needed to be related to my activity and diet, not some medication side effect, if I could help it.

Prior to my knee surgery I thought I still weighed around 175 pounds, but my primary care doctor seemed dubious, and on the scale the number 160 stared at me. I was floored. How the hell had I not realized I’d lost 15 pounds? Sure I’d been walking more, and had bought new jeans, but I didn’t own a scale. After the surgery I was convinced I’d gain weight, but instead I was down a few more pounds. A month after surgery I was at 150, and a few weeks after that I found myself down to 148.

While a lot of people may find this all acceptable because losing 42 pounds over 7 months is hardly dangerous, it’s kind of daunting when you aren’t doing much differently, or at least so I thought. I turned out my calories were in the dangerously deficient range. I wasn’t hungry, so I didn’t eat. It seemed like a simple equation, eat when you’re hungry, yet here I was literally starving myself…entirely on accident.

I went out and purchased meal supplement drinks, and I’ve stock piled the house with protein rich foods. If I can get the calories in, via high protein (I’m a vegetarian and I can’t tolerate dairy so it’s not through meat) meals, then I won’t keep losing at such a crazy rate. Ideally I’d lose some fat, while building some muscle. I see photos of myself 10-15 pounds heavier and prefer that girl, because she is toned. Now I’m sort of waif-like. The guy I’m seeing even commented after returning from two weeks away that he thinks I’ve lost weight and asked if I was eating, and I assured him I was. It’s entirely possible I’ve lost even more weight, and could be lighter than 148.

So what is the big deal? I have a history of ketoacidosis. I’m not diabetic, and the instances were potentially related to a stomach bug, at least one of them was, but my body is quick to metabolize itself. If I’m burning through my muscles (and I am) as well as my fat, I could be increasing the acidity of my blood and urine. Given my recent scare with low potassium, and the fact I was dumping protein in my urine, it’s not a huge leap to assume I am going through some catabolic processes without realizing it. I need to give my body the nutrition it needs so that it doesn’t literally eat itself in an attempt to get what it needs to go on.

I wasn’t happy at my heaviest, but I’m not happy now either. I want to build lean muscle, and I can’t do that if weight is still sliding off of me. They are doing some thyroid testing just in case, but it’s an interesting enigma given how suddenly my weight gain began five years ago. They were convicted I had hypothyroidism for a while because my food diary indicated I should be losing weight while I steadily gained. Now it makes sense that I’m losing, but when you compare my intake to prior intake and my weight gain, it’s funny how such a minor change in calories can yield such enormous differences.

Today was all about protein and fruits blended in my Nutribullet. I cannot stomach much in terms of vegetables, but do plan on heading to the grocery store tomorrow to get stuff for baked potatoes. (High in potassium and easy to digest, go potatoes go!) I don’t worry about indulging here or there, but ideally I need to find consistency. One day I only ate 500 calories. I wasn’t even hungry, I had to force myself to consume what I had consumed. The next day I managed to meet goals, but just barely, by eating a whole gluten free dairy free pizza.

Protein shake powder is on its way, which will help, and I know that I’ll have a handle on it. When you can eat whatever you want in terms of veggies and fruits, it’s different. I can’t break down fiber well, so I haven’t been able to eat a salad in over a year. (Me + Salad = bathroom nightmares.) I can get the nutrition from vitamins, and supplements, so it’s not a total loss, but I’d like to work fruits at least back into my diet via smoothies. I may try spinach in there, maybe, but the green thing sort of creeps me out.

At the end of the day food isn’t enjoyable. Nausea and pain are a chronic struggle, and while they didn’t find sores in my intestines, they did find them in my rectal area, which could or couldn’t mean I have Behcet’s in the GI tract. Given the GI bleeding I experience, it’s likely, but again, it’s all speculative. (Oh Behcet’s, I loathe your hypotheticals.) Having that blocked celiac artery doesn’t help, but they can’t stent it or fix it in any other way, so it’s just one of those things that shouldn’t cause me too much discomfort but often does.

Wait, My Weight?

Humira Pen vs. Syringe : Battle of the Burn

Okay, so I’ve been using Humira for almost two years now. (It took me a moment to realize that…how time flies!) In the office the nurse administered the first injection using the syringe, in my thigh, and I pretty much wanted to punch her in the face. I did the second one myself, in my abdomen, and made the mistake of doing it while standing up. By the way, that is a huge mistake. I didn’t anticipate the burn, and tried to push it faster thinking, “the sooner it’s done the sooner it’ll stop hurting,” which is also very wrong. After that I swapped to the auto injector and told myself life with the pen, while still a burning pain, was better than wasting the stuff by accidentally withdrawing the syringe too soon.

Today I realized I was a few days late on my injection (whoops) because my dose schedule had changed due to being sick. I prefer to inject on Sundays, since I sometimes feel a little flushed the day of and day after, and I enjoy my Fridays and Saturdays if I can. Alas, the whole kidney infection fiasco threw off my dosing schedule. I didn’t inject on Tuesday again because, well, why the hell would you inject on a Tuesday?

Anyhow, I open up the package, and was surprised to see two syringes instead of two pens in there. So that’s why the box looked different. I had a new rheumatologist, and I guess maybe she just defaulted to the usual, but I was a bit annoyed. I started seeking out friends who were nurses or going through nursing school, offering Starbuck’s gift cards to anyone who could save me the horror of injecting myself. I have a high pain tolerance, it’s not the burning as much as it is the insatiable urge to STOP hurting yourself. Seriously, if you stick a needle into your abdomen, and it burns, your reaction is to flinch, move your hand, do something. Coaxing your body to just relax while you burn it is kind of a difficult task.

I decide to suck it up. Worst case scenario I waste a little, which is fine because I’m pushing dates to start injecting on Sundays again anyhow. (I think…it all depends. I may be increasing my dosage in which case it doesn’t matter which day as long as the hot flash portion associated with the shots mellows out…which lately it hasn’t been as bad.)

YouTube to the rescue, I watch a girl inject in her abdomen sitting down, and I think, “Why the hell would you even try and inject yourself standing up you moron?!

So I start, and instead of pushing the plunger as fast as I can, I decide to go slowly, and if it burns, to push it slower. To my amazement, the burning is minimal, the waste is minimal, and I don’t want to cry, kick, or scream. If the next injection goes as well as this one did, I could see myself swapping to the syringe over the pen from now on.

My only concern is wasting. With the pen, it’s in there, rarely have I missed. I have gone too deep, or hit a vessel of some sort and ended up with a  giant bruise, but for the most part, it’s accurate. I have this nightmare scenario where I miss with the syringe, and I’ve wasted a good portion of the medication I need to feel normal. I already have two oral ulcers from being a couple days late, I can’t afford to be wasting any of the medication.

As for the ulcers, meh, they’re small in comparison to the usual, and thus far my legs are intact. I think the hard part about Behcet’s is the variety of symptoms you can have.

I’m going to write a second blog today about weight loss, weight gain, and the irony of the entire situation I find myself in, because I think it’s something most people who juggle chronic illnesses and meds for them can relate to. I’d write it now, but some gluten free vegan Pad Thai is calling my name!

Humira Pen vs. Syringe : Battle of the Burn

Won’t You Get Sick?

So the guy I’m seeing (casually dating?) I don’t know…it’s complicated…anyhow…he has the man flu, which is basically saying he’s got a cold. Now, for whatever reason, I don’t seem to get colds. I may get some congestion for a day or two, but that’s about it. Maybe I’m getting colds and not noticing because I feel crappy in general, so adding in a little extra coughing or fatigue wouldn’t be that noticeable. So this guy, I won’t say his name, recently came back from traveling for work, one week in the same time zone, and once eight hours ahead. Between the traveling, and the jet lag, I knew he’d feel a little run down, but he’s been coughing a lot and lamenting the man flu. I’ve wanted to see him since he left, since he left while I had a kidney infection and I only vaguely remember the visit (brought me survival basics and snuggled me for a couple hours). Initially he said he didn’t need anything, but I informed him I knew that the man flu came with stubbornness as a symptom, and that I was literally stockpiling cold/flu meds because I rarely get colds, and he relented admitting he did need a few things like orange juice, soup, and whatever meds I could spare.

Now, the inevitable comment was that he didn’t want me to get sick. I had to reassure him of a few things. First, I rarely get colds. It’s like the one thing my immune system can apparently handle. Stomach bugs are the bane of my existence, I can barely be exposed and end up hospitalized, but colds not so much. Second, if I did get a cold, the symptoms would hardly register on my scale. Seriously. Third, the benefits of having a chronic autoimmune condition are the easily accessible drugs. If I did get a nasty cough, I could get a nebulizer in a heartbeat. Problem solved. I left out the third because it’s doubtful that would happen.

Other people think the same thing, and I think it’s a misconception that everyone with an impaired immune system has to avoid everyone who is sick. I don’t go around licking door handles, hell, I wash my hands more than the average person and make sure my roommate does, too, but it’s about knowing your own body. My dad has lupus, and I can’t remember the last time he’s had a stomach bug. He gets all kinds of obscure diseases and colds constantly, but manages to avoid GI bugs. Would either of us willingly subject ourselves to someone who was really sick? No, but it’s a risk vs. benefits scenario.

In this instance, we’re talking “man flu,” not actual flu. There was no fever, no weird mucus, just a hacking cough, and some general tiredness, which was more relate to jet lag than being ill. Had he told me he had a fever, body aches, and chills, I’d have dropped off flu meds, and bolted. I got the flu shot, but if it didn’t work this year, then I’m screwed. I always get bronchitis when I get the flu, and while it’s not enjoyable, I still don’t get as sick as other people who get the flu. My body seems to handle the respiratory stuff well, even if my lungs suck a little at being lungs.

Then there is the whole positive of the situation. I really like him, as a person, and while we’re not rushing into defining things, I know that he didn’t hesitate to be there for me when I was sick, and it’s my nature to do the same. Sure, I hope that this goes somewhere, but for now I’m being patient and just waiting to see how it all plays out. Wants aren’t needs, and as long as I stay in touch with my needs, it’ll be okay. I won’t lie, I’m getting to a point where my needs are starting to be unmet, but that’s only in the context of wanting a formal label of what we’re doing, or at least boundaries. (I have a friend who routinely points out that his actions should matter more than his words since my ex said the right things but did the wrong things, but there really are no wrong things since we haven’t agreed to be exclusive with each other.) That’s diving into more of a relationship blog topic, but then again, it’s sort of relevant.

Stress. I’m forever stressed about whether what I’m doing is too much, am I being too pushy, am I being too fun. My mind is always focused on what the end goal is, for me, and I forget to just enjoy what’s happening now. It isn’t when I’m with him. Tougher we always have fun. It’s when we’re apart that I worry. I think about my ex’s comments as I left, that nobody could love someone who gets as sick as I do, and I think, “what if he’s right?” I have this fear that this guy is going on dates, meeting other women, trying to find someone who he also clicks with like we click, but who maybe isn’t sitting on a metric ton of physical and emotional baggage. We all have baggage, and my emotional baggage is relatively in check, but the physical stuff is out of my control.

My father lives alone. He remarried after divorcing my mom, but after that, swore off marriage. I’m not naive enough to think he swore off women, but he never married anyone else, and has lived alone for at least 15 years, probably longer. He once made a comment about it being hard with his health to really be there for other people, and now I live with the fear that maybe he’s right. What do I offer in comparison to a shiny toy that isn’t dented? I know my dents make me who I am, that I can be positive and upbeat in situations where other people panic because I go through some of the shittiest things, but it doesn’t mean I think men are falling over themselves to date someone with medical issues like mine.

I never lie though. The second time I saw this guy I happened to spend the night (chastise me later, this may be part of why we’re in limbo, I know) I dumped out my meds on the table. I didn’t even hide it, I just did it, and was like, “I take these, and then an injection every two weeks.” I told him I had Behcet’s, that it’s not contagious, but not to Google it because holy hell, the pictures are bad and I don’t have it that bad. That was the first or second week of September, and he’s still around, so clearly I didn’t scare him off…but that’s the question of course…did I or didn’t I?

There is a difference between liking a girl, sleeping with her, liking her and sleeping with her, and committing to being with just her. Sometimes I’m worried he’s hesitant, not because of my dating past or his, but because I’m flawed in ways that can’t be fixed. I could go into remission, I could get worse, there really isn’t a predictability to autoimmune diseases. You may use the, “you could get hit by a bus tomorrow,” analogy, but that’s not the same. I will always have Behcet’s, it will never go away. Even in remission, I still have it. Yeah, there are always busses, but it’s not like you got hit by a bus once, and now you will forever be getting hit by buses. Completely different scenarios.

Should I have worried while he was coughing? Maybe, but I’d be more worried if I’d hesitated. If I’d stayed home and taken him at his word, letting him fend for himself when he clearly needed some assistance. Worse, I would have been agitated at not being able to see him for whoever long because I’d be waiting for him to get better, and it had already been a couple weeks due to his travel. I also don’t want to live in a world where I hand sanitize to hell the people I care about just to have a basic relationship with them. I do make the roommate wash her hands when she leaves and comes back to the apartment, but I live here, and there is a stomach bug going around town. This guy is patient zero, living in patient zero town (his apartment), it’s not like I’m subjecting myself to tons of things.

Our situation stresses me out, because it’s undefined, and I like structure, but at the end of the day I just need to suck it up and deal. There are more important things in my life to focus on than whether or not we’re going somewhere, despite what I want. As for the man flu…if I get sick, I get sick. I doubt I will, but even if I did, I can’t imagine ti’d be much worse than what he has. In fact, I can almost guarantee you I’d handle it better. I mean, it is the man flu 😉

Won’t You Get Sick?

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