I've been in AZ for the past week, so I've been out of the loop. I'm starting a new contract next week. This one is temp-to-perm, so if they like my work, I'll have the option of joining the company as a permanent employee. I sort of like the flexibility and variety that comes with being a contractor, but you never know, I might really like the company and the job. Stranger things have happened.
Yes, you do have a lot of comorbidities, which can make things more challenging. One thing can affect another, which can affect another, etc. I don't know how much prednisone you take when you take a burst, but having to take 3-4 bursts makes me think that your asthma is harder to control, than say, mine. I haven't taken prednisone for quite a while now, and when I did need to take it, it was for a short time, like 10-14 days, and was maybe once per year, usually when I had my yearly winter cold. When I first started getting allergy shots, my asthma was harder to control. At first it didn't respond very well to medications, even though I took a lot, but after about 4-6 months of allergy shots (I did rush immunotherapy), my asthma started making a complete turn-around. This winter has been one of the coldest on record and I haven't needed a neb treatment prior to running or biking. Granted, in the scheme of things, it doesn't get very cold where I live, but still. A couple years ago, I had to do a neb treatment if the temperature was below around 45. This year I went running when it was 26, and I was fine using just my inhaler. I coughed a little shortly after I stopped running, but it resolved on its own.
My allergist's office does ENO readings, but I've never had one. I don't know how they decide which patients need ENO reading and which ones don't. My spirometry readings always match my current state. If I'm not doing so well, my spirometry readings are lower then when I'm healthy. They've been stable the past two check-ups. I get a check-up in the fall every year, and I go in between check-ups if I'm experiencing problems. I've been fortunate because, for the past two years, I've been able to head off problems at an early stage, so they don't develop into something more serious. My symptoms come on pretty gradually, so that helps. It's just a matter of me noticing the subtle changes.
I hope the references I gave you have been helpful. I know I'm not much help in the way of dealing with severe asthma. Moderate asthma and severe asthma are completely different beasts. Most of my significant problems were at night, so that's when I had to deal with them. I did have the problem of sleep deprivation, and people didn't believe that nocturnal asthma could cause so many problems with daily functioning. Severe sleep deprivation can really impair one's cognitive abilities, which affects daily functioning. Not to mention the inability to think about anything except for the next time you can sleep.
I kind of rambled in my post today. I hope you were able to muddle your way through it View Thread
Wow....there are really a lot of things to factor in your case. You definitely need someone who sees the big picture. Does the restriction of your oropharyngeal airway affect your breathing at all? I don't know what ENO means. I'm thinking it's exhaled nitrous oxide, but I'm not sure. Correct me if I'm wrong.
I ran into the same difficulty with specialists when I had my mystery illness. I had JRA (juvenile rheumatoid arthritis) for a couple years when I was little. So, the rheumatologist naturally concluded I had adult Stille's disease, even though I didn't have joint pain or a rash. The immunologist concluded I had some type of abnormal immune response to the flu. The infectious diseases doctor concluded that I had some sort of infection, like Lyme disease or something, even though all the tests were negative. The CFS doctor concluded I had CFS even though I didn't meet all the criteria. One doctor concluded it was all in my head and sent me to a psychiatrist, even though there were documented medical abnormalities. From all this, I learned, that in the scheme of things, doctors are relatively clueless.
I was officially diagnosed with asthma while I was in the military. I didn't have any problems with it until I got into basic training. They gave us a bunch of immunizations and I got sick from them. I couldn't stop coughing, especially at night. It was pretty bad. The following winter, when I got to my first duty station, I started having problems with shortness of breath and coughing, again. When I went to sick-call, the doctor took a spirometry reading and told me I had asthma. He wasn't very nice about it, but he gave me medicine. It didn't affect my enlistment at all, and they even sent me to airborne school (parachuting) prior to my next duty station.
Hopefully you can make it to National Jewish. They have a really good reputation of treating difficult cases, and your case certainly qualifies as difficult.View Thread
I've read about vocal cord dysfunction, and how it mimics asthma, but aside from that, I don't know much about it. It doesn't seem like it's on the short list of diagnoses because people go for a long time being treated for severe asthma, to no avail, before they're diagnosed with vocal cord dysfunction.
It makes sense that you could have asthma and something else going on. The notion that you have a low-grade sinus infection would explain a lot. Has your doctor ever done a sinus CT or something to check for a sinus infection? I know when I get a sinus infection, it really throws my asthma for a loop. As you said, doing exercises for vocal cord dysfunction won't hurt you. Let's say you have vocal cord dysfunction and asthma, when would you notice an improvement from doing the exercises? A few months back, I hurt my IT band running, and it took 4-6 weeks of stretching and exercises before I could run again. I know the IT band and vocal cords aren't the same, but I'm thinking it would take some time to notice results.
When my asthma was out of control, my worst symptoms were at night, too. For me, it was mostly because I'm allergic to cats and my cat was sleeping next to my head at night. I don't have much problem with allergic asthma anymore, but I still get some allergy symptoms when the pollen counts are high or if I spend too much quality time with my cat.
I had post-viral fatigue syndrome, CFS or something of the sort after a bought with the flu. It was like the infection didn't go away. I was sent to specialist after specialist, and they all had their theories of what was wrong with me. And, yes, I was also sent to a psychiatrist for evaluation on more than one occasion. The entire experience has made me leery about doctors.
If you happen to run into funding, SARP might not be a bad idea. You're right, the trip could end up being a waste of time and money. However, it could also yield benefits in that they would probably be able to tell you whether or not you have severe asthma. They'll look at your medical records, do an exam and formulate an opinion. I doubt they'd base their opinion on a single spirometry reading.
You're right. In the scheme of things, the medical world doesn't have a clue. For example, they have no idea what causes schizophrenia, though they've come to the conclusion that it's probably an umbrella term for more than one illness. Schizophrenia research is all over the board. I don't keep up with asthma research as much, but I know there are some drug companies who are working on drugs for severe asthma (as opposed to mild or moderate asthma).View Thread
I think your friends are correct. It sounds like your counselor doesn't totally understand when to apply CBT techniques. He just applies them to every situation, even when it's not appropriate. When I went to counseling for my ADHD, it wasn't like that at all. It was more about changing my behavior in certain situations than being irrational. I don't even remember my counselor mentioning the word "irrational" in relation to the behaviors they were trying to change. When I participated in the research study for CBT and schizophrenia, they never mentioned my thoughts or experiences as being irrational. It was about how likely the scenario was and reducing my anxiety associated with each scenario. Both times, the beginning was mostly educational, in that they taught me about ADHD and schizophrenia, respectively.
From my limited experience with CBT, it doesn't seem like the technique even applies to your situation because there are no behaviors that need to be changed in certain situations. It also sounds like your counselor listened to respond, instead of actually listening to what you were saying.View Thread
I sent you an email last night with his FB address. Just in case you didn't receive it, I just sent it again this morning.
One of my sisters has problems with anxiety. She'd have so much anxiety that she'd become paranoid. For me the paranoia would cause a certain amount of anxiety, but for her, it was the other way around. It really wreaked havoc on her life for a number of years.
I don't have severe asthma, so I can't truly appreciate what you're experiencing. Severe asthma is a completely different beast than moderate asthma (which is what I have). But, I can understand your desire to talk to people who know what you're going through. I'm sure you feel very isolated at times.
Here's a website, http://breathinstephen.com/, that is written by the guy whose FB address I emailed you. He writes about his life and the stuff he goes through with his severe asthma. It's a good website. I think you'd be able to relate to what he writes. He has a "contact me" page, so perhaps you can contact him that way if you don't want to do FB. I have a FB page, but I'm not into FB. I check my page every month or so. My spouse leaves posts on my page like, "I think I hear crickets on this page." What a smart butt...lol.
I hope the website (http://breathinstephen.com/) and FB address help you. I know if anyone can relate to what you're going through, it's him. I know he's been through a lot with his severe asthma.View Thread
For me, schizophrenia is a different situation than what you experience because I have quite a bit of insight (into my illness), meaning that I'm able to recognize when I'm hearing voices or what have you. Some people who have schizophrenia lack that type of insight and go head over heel into their paranoia, delusions and hallucinations. I participated in a research study using cognitive behavioral therapy for voices. It helped me tremendously. Before I participated in the study, I had relatively little insight into my illness and would do very odd things in public. People aren't very nice to you when you start talking to your voices and start accusing them of saying (harassing) sexually explicit things to you. If you accuse your boyfriend of telepathizing with his cats, well, you probably aren't going to have a boyfriend for very long. Clever responses don't work in those situations. It's too obvious that something is wrong. I can get by with my vague responses because I'm not too obvious. But as you describe, your symptoms are obvious and other people can't help but notice. In that case, you can't really give a vague response.
I wasn't trying to imply that what works for me will work for you. I was just explaining what I do, given my situation. In the past, I just had to deal with people staring at me and talking about me due to my behavior in public. For a long time I didn't really understand that schizophrenia was causing my symptoms. I thought every thing was real and acted as such. I'm sure I was the subject of conversation at more peoples' dinners than I wish to know.
Hopefully you'll find something that works for you. People can be really mean and insensitive. It's hard to know what other people are experiencing unless you've been in their shoes. I never mean to imply that I know what you're going through.
I'll check my email and give you my friends facebook address.View Thread
I'm so sorry people have been so cruel to you I didn't expect that people would respond so negatively to you wearing a mask. I expected people would find it strange, but I didn't expect them to respond the way you've described. People can be so ignorant and mean!
I know your asthma is much worse than mine has ever been, and I can only somewhat relate to what you're going through. There's not much you can do about strangers who blurt out rude comments, but I think there are ways you can approach nosy bystanders without having to give a run-down of your medical history. I only give out certain aspects of my life on a need-to-know basis, and strangers don't have a need-to-know. They get clever excuses that don't solicit more questions, whereas my family and friends get the truth. I know my way of dealing with things is deceptive, but I find it works for me. A stranger is lucky if they even get my real first name
It sounds like you're getting really good input from the people in your support group. They're right about the media portraying people who aren't working as free-loaders. The media clumps everyone into the same category...people who don't work and don't want to work, and people who honestly can't work and wish they could. One of my brothers-in-law accused me of being a free-loader when I couldn't work due to my schizophrenia. It really pissed me off. Only a mental midget would blame a sick person for being sick. I've never come across that one.
I met a guy on FB who has severe asthma and is being considered for a lung transplant. He used to host a forum for people who have severe asthma, but I'm not sure whether he does that anymore. If he does, I'll leave a link here for you. If you want to connect with him, I can give you his FB address (via email only). I have to admit, the guy is pretty amazing. He used to work as a respiratory therapist, but had to stop working due to his asthma. He has a lot of followers who have severe asthma, and I think it would be beneficial for you to hook up with them. I'm sure he and many of his followers have been through the same things you're going through. If you want to hook up with him, send me an email and I'll respond with his FB address.View Thread
Cognitive behavioral therapy probably wasn't the best choice for you. It made sense for my situation (treating adhd), but not for yours. I read on another post of yours that you have myasthenia gravis. I've heard of that before, but I had to Google it to find out more. Do you think any of your breathing problems could be associated with the myasthenia gravis? You definitely have your hands full. Seeing someone who specializes in chronic conditions would probably help you on many levels, not just with your asthma.
I didn't mean to imply that you minimized the problems that schizophrenia can cause. I guess I was just trying to communicate the ways it has affected my life, and that it can be visible, but in a different way. If a person is wearing a mask, other people may think it strange, but they can come up with some plausible explanations in their head: "they have an infection," or "they don't want to get sick." If a person starts acting weird in public, people assume: "they're crazy," or "they're tripping (on drugs)." It's all a matter of other people's perception. The more educated the outsider is, the more plausible explanations they're going to have, and the more comfortable they'll be with the situation.
One of your employers is offering insurance for you? If so, hopefully they subsidize it, and it'll be less expensive than getting it through the exchanges (I've heard that some of the policies on the exchange are pretty expensive). If your employer offers a consumer-driven health plan, it might have a nation-wide network, and you maybe can go to National Jewish for your differential diagnosis. That would be great!
I'm glad you're starting to meet people. It helps to be able to talk to other people. I know my experiences are different that yours, but it helps to talk.View Thread
An allergist would be a good choice if you want to see a specialist.
I run, swim and cycle. If I use 2 puffs of albuterol before I swim or ride, I'm fine. It'll last through a 3-hour bike ride and a 90-minute swim, no problem. However, if I use 2 puffs before a run, like you I end up using more an hour or so into my run. I started using 3 puffs before a run, and that seems to last for my entire run. If I'm running in inclement weather (cold or hot and humid), I use 4 puffs. My runs are typically around 90 minutes, with a long run of about 2.5-3 hours and a shorter run of about 60 minutes.