I am calling my GP tomorrow because of my worsening shortness of breath. I get over a flare, then it comes back worse. I do the simplest of things and I am gasping like I just ran a full marathon full out. I take my rescue around 7-8 times a day. It helps for a while, then I am back to not being able to catch my breath.
I also have a phobia with talking to health care professionals about myself. I know in the past, I have called and forgot half of what I wanted to say, or panicked and just wanted the call over. So silly. I work with doctors all day and I have no problems that way. But, when it comes to talking to them about my own problems, that is very different!
I don’t even know what to say to my doctor. My father always told me that it is my responsibility to do my own part in my health, and that nobody can help me if I don’t help myself. Which is great! Good advice! I agree 100%. But when I was younger, he and my mother would tell me they didn’t want to hear me complain, or if I was not feeling well their favourite thing to say was “do you have cancer? No? Well then it can’t be that bad!” So I feel real anxiety every time I need to go say something to someone. But it has to be done.
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Willow7733
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I found it helpful to make two copies of everything I wanted to say or discuss... One for the doctor and one for myself! Go over each thing and you both can check things off together as you cover all you want, you may even think of more yet, you have the list to return to! Best of luck...
I tend to jot things down to remind me of what I want to say to the medics as I have had many occasions in the past when I've come off the phone or out of the surgery and thought, 'Dammit, he/she sidetracked me and I forgot to say ...'. It's so annoying when that happens!
I've just seen the reply from Yracy and making two copies makes a lot of sense. I might try that too, particularly when I see the respiratory consultant as the appointment is usually lengthy and involves a few tests as well, which can throw things off course a bit.
I think anxiety about speaking about your own health may be quite normal for many of us. When I was a child I had several longish illnesses and lots of tonsillitis. The doctor used to visit and my mother would almost turn it into HER event. I couldn't get a word in edgeways and she would often tell the doctor that things had happened when I didn't think they had. I wasn't ever allowed to interrupt my mother. When I was older, we saw our regular GP's partner. He was lovely. He stopped my mother speaking for me and said, 'I want to ask your daughter these questions and I want HER to answer.' I felt really empowered then.
However, later in life, when I had my own children, we had quite an old fashioned GP and I am sure I was labelled as a neurotic mother! He rarely took me seriously and would fob me off, I felt, even though I usually turned out to be right. Yes, my child was having an allergic reaction - it was not ringworm. Yes, my children have got measles - it was not a heat rash. Yes, my child really does have a bad ear infection - that's why it's oozing all over the pillow, and so on. My confidence dropped dramatically then and I found it really hard to say things to my GP for years, until he retired and we got a new, young doctor who was much better at listening. Our current GP and my consultant are both really lovely, but I still get tongue tied sometimes!
All our past experiences come to bear, don't they?
You know how to talk to doctors in your professional life and that gives you the edge over the rest of us, I think, so go for it! Write it all down and give it all you've got. It'll be worth it to get some treatment for the ongoing flare up.
Remember, you're not the only one who goes through this - it's hard to be a patient some times. Good luck - hope you get the treatment you need.
Sorry I only just saw this, but I've been thinking about you and wondering how you got on. I would have said the same thing: write a list, stick to it, and then write down the answers. Too often I've got side-tracked and found I haven't asked everything I meant to ask.
I didn’t call. I am being trained for neurology ICU, and I just couldn’t get the time to be by my phone to have them call me back. I am off this week, Monday is Thanksgiving here, so I was thinking Tuesday morning I will call. I have an app on my phone where I plug in my peak flow, and symptoms and today it told me to go the the ER because my symptoms are getting bad....but I work there off and on when they need me. I don’t want to go in. Especially since I was called this morning to pick up a shift there today. I said no (I am so tired and not feeling well).
I will first thing tomorrow morning. Everything is closed today for Thanksgiving. 😊 I am so nervous already. They will send me for a Covid test...I have some symptoms that are similar. Short of breath, headache, nausea (today). 16 of my co workers are isolating because of an exposure in the ER this week. I should get tested, just to be sure. But I really don’t know how to explain to him my worsening wheezing and shortness of breath.
I think worsening wheezing and shortness of breath unless you take X puffs of blue every day is a good start, then let them ask you questions. Don’t you?
Happy Thanksgiving! I hope you manage to enjoy your dinner. 😊
I agree 100%...I am going to mark that down so I don’t forget it. My family is in another city today. I made a homemade pizza and am going to watch some movies on Netflix.
You realize the shortness of breath and fatigue may be symptoms of COVID, don’t you?
I’m starting to wonder if it would help to have one of us — me or AirIsUnderrated perhaps — call you the morning you plan to call the doctor — or text/SMS you so you could be online with one of us while talking or waiting for the doctor. Other than having to go downstairs to do laundry tomorrow, I’ll be in all day.
If it will help, I’ll give you my number/contact info and hold your hand — cyberly😁 — while you do this call (and as many future ones as I can).
Thank you for your kindness! I really appreciate it. We have had no cases of Covid here since July. But, people started getting too comfortable and stopped social distancing and wearing masks (and started traveling), and someone brought the virus back and infected a senior citizens home this week. They went to restaurants in the city, and to several popular stores, and within days, 75 people are sick and three are in ICU at the hospital I am working at. In the ER department (where I work), 16 of my co workers are now home isolating, as the elderly from the home came in and possibly infected staff. So, this week was the fifth time I have been tested for Covid, because of my work. I am negative. I also do not have any other Covid symptoms and this has been going on (my breathing worsening) for a few months now.
I called my doctor! Because we are now in a state of lockdown (because of the surge in Covid cases in the community), the way they do things is you call, the secretary listens to your problem, then gives you an appointment. So my appointment is Thursday morning sometime between 9am and noon. I am marking down all the things I need to tell him so I make sure I don’t forget or brush it off. 😊 I am tired of feeling this poorly and really need to get this settled. My father used to tell me that being nervous is silly because the doctors work for us, they are there for us...but then I read about people being brushed off when they are struggling, and it makes me so nervous. Maybe it is not so bad?
Willow, remember anytime you meet someone new, like a new patient in the ER — they might be a bit nervous, too. I’ve found that being prepared is the best way for me to stay calm and focused. For example, I read up on the doctor’s background (or ask about it beforehand), so I can ask him or her about where they went to school.
To give you an idea, my longtime allergist left the big university practice I go to last November. She was the only doctor who believed me when I kept telling her (and them) that there was something else wrong with me — that my asthma had changed, and that I had developed some other difficult problems no one else could solve. She fought for me, and then lucked out when she ran weekly blood tests to try to qualify me for a Xolair trial in 2012. That was when she found, really by accident, that I had off the chart levels of eosinophils.
It still took another 5 years for her to get NIH — our National Institutes of Health — to diagnose me as having atypical HES, and to get me on a combination of biologics (Xolair and Fasenra) that have had miraculous results for me (zero eos since the first Fasenra injection in June 2018). Then she fought to build a team of top doctors in different specialties to tackle my other problems. So her leaving was scary.
One of the younger people in the practice took over, and I think she was as nervous about me as I was about her. But I asked about her school — she and her husband trained in Chicago. And we’ve learned how to communicate with each other. When there’s a problem, we talk about it promptly, I ask for a solution and then I let it go.
She’s very kind — and even during the holidays or weekends and with two toddlers, she responds to emails or calls to check on me if I’m sick.
And I try to be kind back.
But my offer still holds — let me know if you want me to stand by. I think you’ll do fine.
Look how far you’ve come — you’ve got an appointment and a list and a plan!
Let us know if you need anything before or during — and tell us how it goes!!
So I had my phone appointment. After I was finished, around ten minutes later, I was contacted by our local asthma clinic for an appointment on the 30th! So moving forward and feeling silly for not getting help sooner.
I had my phone appointment, and am going for tests this week at the respiratory health clinic. I am shocked how quickly they get everything set up. New medication is going to be added on my daily meds. I will know more on Monday when I go see them. I guess it will be an in person appointment which makes me happy. I like that better. But after talking to you all, I think I will be much more vocal and stand up for myself. I really don’t want this to be a waste of my time. It took me so long to get the nerve up to go this far!
HOORAY!!! Consider yourself feted with balloons and confetti (and chocolate, if you aren’t allergic:)! I’m so incredibly proud of you, Willow — I know how long and how hard you’ve struggled with this.
Be prepared for there to be times when you regress, but take some photos of things that will remind you of the worst times — and keep them on your phone (and fridge door) to remind you how far you’ve come.
I’ve had to spent the past week telling myself the same thing, over and over — I’ve gotten through this before. It’s been much worse than it is now and I’ve gotten through it. I’ll do it again. And if I need help, I’ll find some, somewhere. But this is not how the rest of my life will be — only today, and maybe tomorrow.
Please let us know how the appointment goes, and what new meds they try and how they work for you. I’m so excited for you — yay!!! Hugs! Debbie
I just got off the phone with my GP, and he was SO nice!!! He wants to see me in person to talk to me about a spirometry test I had last week. Why was I so nervous to talk to him?? We joked and laughed and talked about how Covid is getting worse here...looks like we won’t be able to spend Christmas with family this year. My city has exploded with the virus (because people stopped caring and following g the rules, and started traveling, bringing it back, and not isolating at all.). So now I am determined to not be nervous about seeing him face to face...haha
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Struggling with severe asthma and the opinions people have on my condition
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