Official Diagnosis and Treatment: Cautiously Optimistic

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I met with my pulmonologist last Tuesday and had my diagnosis confirmed.  I decided to do some more research on my condition and how to manage it.  I still have doubts that this is what’s going on, mostly because I’m finding that the treatment isn’t even touching it at the moment.  I’m trying to just be consistent despite that and look into ways that I can manage it on my own.  I’ll keep seeing my doc until we get it figured out.

Despite the fact that I have doubts because treatment is taking a while, when I read about the condition, it fits me 100%.  It is a pretty uncommon form, so doctors don’t think about it.  Luckily some testing proved it to be true (on top of symptoms, history, and all that I’ve tried).  I’m hoping and praying that the treatment will start working SOON.  I am scared to hope until then.

Diagnosis, Symptoms, Treatment

I have something called Cough-Variant Asthma.  This link shares 7 facts about it and I feel they are right on.  I’ll sum them up here.

  1.  It happens because your body is trying to expel something in your lungs but it is constantly unsuccessful.  It’s a consistent over-reaction of the lungs.
  2. Classic and cough-variant asthma mostly have the same triggers.  They list many, but I’ll share mine below.
  3. Cough-variant asthma has a dry cough.  This is the case for me about 95% of the time.  Sometimes I have some phlegm in the morning.
  4. Doctors aren’t sure why some people have the cough-variant type of asthma over other types.
  5. There are soooooo many types of cough that it is hard to diagnose (I have been coughing and seeking answers for 3 years). I have had so much testing and attempted treatment including: upper endoscopy, nasal endoscopy, 2 chest x-rays, a sinus CT, a chest CT, lots of blood work (like $2000 worth), allergy testing, and the one that gave some answers was a pulmonary function test.
  6.  The treatment is basically the same for classic asthma and cough-variant.
  7. Cough-variant asthma can cause other conditions if you don’t get treated such as classic asthma and airway remodeling (a permanent change in your airways).

The symptoms that are the hardest for me are obviously cough, but I also feel inflammation in my lungs often.  And these make me so worn out and make just basic tasks difficult some days.

Despite asthma treatment not working for me in the past, we are trying again.  We are trying two things that I have tried before in conjunction with a new one.  So I’m taking Breo (steroid powder inhalant), Singulair, and Zyrtec.  I’m going to be meeting with my allergist as well to address the mold allergy that I found out about a couple weeks ago (I didn’t have a reaction in the office, but I had a reaction the next day).

My Triggers:  Known, Possible, and Unknown 

There is a small possibility that medical treatment might not work or not work to the extent that I would like.  I hate that, but I’m trying to be realistic.  I want to be able to focus on what I can do on my own.

Triggers are the main reason for asthma symptoms (from my understanding).  There are so so many out there, but each person has different ones.

I am pretty sure I have quite a few.  Some I know for sure, and some I am still trying to figure out.

My main triggers are stress (anxiety), dairy, mold, smoke, running, and fragrance.  I’m pretty sure pollen, our dogs, dust, and cold air affect me as well.  And definitely more things that I haven’t figured out.

My allergy test was negative for everything except for mold, but my pulmonologist things that I am allergic to more than that, which is why he’s having me take allergy meds as well.

All I can do right now is to focus on the things that I know cause me to have flare ups.  And I’m doing a lot of journaling to possibly figure out the rest.

Managing My Symptoms

This is going to take some time, effort, and patience because I’m going to have to figure out the triggers that I don’t know about PLUS manage the triggers that I DO know about.

Stress and Anxiety

If you’ve been following me for long, you know that anxiety is something that I suffer with daily despite medication.  It’s worse right now since I feel terrible all the time in addition to how hard things are for everyone in the world at the moment.  COVID, issues with racism and hate, politics, and more are constantly bombarding me.  It wears on me daily.

Steps that I’m taking:

  • Self care is my #1 priority:
    • Showering/bathing daily
    • Getting dressed
    • Taking meds correctly
    • Drinking enough water
    • Eating healthy (including being more consistent with meal planning and meal prep)
    • Getting up and moving even when I don’t feel like it
    • Getting some exercise (I can’t run like I would like, but I can hike and walk)
  • I’m carefully considering and praying about deleting Facebook for good.  It’s just hard!  I love the opportunity to talk with friends that I don’t see, but the negativity is so overwhelming most of the time.  I just don’t want to delete without praying and thinking it through.  I tend to do these types of things in the midst of my severe anxiety, so I want to take it slow.
  • I’m going to start seeing my counselor again.  I’m planning to ask if she can just have me on her schedule weekly for a while.
  • I’m going to discuss the possibility of Seasonal Affective Disorder + how to manage my anxiety better.  Maybe dropping a med and starting a new one.
  • Giving myself grace without wallowing in things.  Grace is so important, but so is challenging myself and doing the hard thing.

Other Areas

  • I’m attempting to go fragrance free again, but it’s super hard.  I LOVE scents.  I can manage some things, but I honestly really have a hard time with essential oils.  And fragrance in body products.
  • I’m going to try to wash my sheets in hot water a few times a week.
  • I’m having to stay away from my parents’ house for a while because my mom smokes, and while she doesn’t smoke in the house while we’re there, the smoke is in the walls/furniture/etc.  My doctor is hoping he can help me get more stable so that it’s not an issue.  We’ll see what happens.

I’ve been using a journal for a little bit to maybe identify triggers.  It’s so hard when I am always coughing, but I tend to get much worse with some triggers, so I’m trying to identify those as a starting point.

Allergy book

Physical Health

I mentioned a bit above, but I’m going back to focusing on my physical health in addition to mental.  I feel that they all go together.  I don’t, however, plan to jump in all at once and expect perfection out of myself.  I know from experience that that doesn’t work.  It’s not sustainable.  The main things that I’m going to focus on are:

  • Be more consistent with meal planning and prep again
  • Get in some form of regular movement
  • Drink more water

Taking better care of myself physically is true self care and makes me feel better mentally.

 

Most Importantly

I am going to focus on gratitude again each day and the good in my life.  God has truly blessed me with so many good gifts, and I want to be able to see those for what they are.  What you think about is what controls you, so I’m trying to think about good things.

 

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