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.