A Mid-Life Surprise
At the age of 46, I had my usual early spring allergy issues arise. Despite using nasal sprays, OTC meds, and avoiding the outdoors, I could not get past it. My primary care provider wrote a prescription for a steroid dose pack and told me I needed to see an allergy doctor. I went back to see her again, but this time, I was having shortness of breath that was becoming an issue.
My first appointment with an allergy specialist
We scheduled the appointment with an allergy doctor. I had testing that confirmed my allergies, and with some other testing was told to my disbelief that I had asthma.
I would have to go home and lie down an hour, or more, to recover. I also had been coughing all night for 2 years and nothing helped. Albuterol took care of that! I was told I should be stable soon and if I used the maintenance inhaler, I would probably feel better than before.
One of the scariest times of my life
A couple of months later, I was still having issues and came home to a broken AC. I sat in my hot house with my husband who was locating a unit to install, and within ten minutes, I felt like I was suffocating. I went to my car and turned on the AC, and it did not help. My friend drove to me at this time and she took me to urgent care where a few nebulizer treatments got me right back to normal. This was one of the scariest times that my asthma has affected my everyday life, not to mention the longest ride.
9 days of testing
My health continued to decline despite all the efforts of my doctors. We ruled out cardiac issues, set me up with a pulmonologist and I did everything they said. I was up and down and had to call 911 and take the ambulance to the hospital a couple of times. It ended up two years of this non-stop cycle. My doctor said he wanted to make sure nothing was being missed and sent me to Denver, CO, to National Jewish Hospital. I spent 11 days there and 9 of those were full of testing from morning until 4 or 5 pm.
Let me back up and explain my asthma at this point. I had allergic asthma, exercise-induced asthma, chemically induced asthma (perfume, Windex, etc), night time cough variant asthma and it was fierce and silent. Yes, I do not have an audible wheeze.
My time in Denver showed I had asthma, mild bronchiectasis, mild tracheobronchomalacia, Vocal Cord Dysfunction, mild GERD, and moderate esophageal motility disorder. I did not have any immune disorders.
Faced with a number of side effects
That was two years ago. I have educated myself on these disorders and continue to work with my team of caregivers to maintain. I see my allergy/asthma doctor, my PCP, my pulmonologist, and my endocrinologist. I am on prednisone every day. We have a plan for self-maintenance as issues arise and when to call to have more intervention. I have osteopenia now, gained weight, bruise horribly, have borderline hypertension, and am prediabetic thanks to prednisone. But it keeps me breathing.
Being a nurse surely helped me in this process, but the support I received from the chat forum at AAFA gave me more information than all of my doctors together. They were some of the rare birds like me who had severe asthma. My doctors all tell me I am the worst asthmatic they have so I can't expect them to have first-hand experience, but the members of AAFA did. Their support and my arsenal of medication got me through those first two very difficult years.
Asthma affects your everyday life
Now in this COVID-19 time of quarantine, I am doing telehealth with my providers and seeking the support of an LCSW to help me cope with the personal issues that I am facing. I have managed to work full time through all of this, even when on high doses of steroids which are leaving me in a wheelchair to go to public places and sometimes at work. I have horrible side effects (knee, hip, and elbow pain) when I am over 20-30 mg of prednisone per day.
I won't be able to do work full time much longer. I don't have the stamina to work 40 hours and have anything left over for life, even self-care some days. It's bad when you have to rest up and pre-treat to take a shower. I average 6 t0 10 nebulizer treatments per day-- five are standing orders and the others are for problems.
My therapist has given me resources like apps, books, and coping strategies that are really helping. Don't shy away from getting emotional support. Asthma affects all aspects of our everyday lives, how could it not be a big deal?
Spending time doing what I enjoy
I am fortunate to have a wonderful support system with my family, and I am painting and growing things in my greenhouse. I manage to cook or co-cook most evenings, so don't think I don't have a life. I do!
I actually don't think I really started living until I was faced with losing my good health. Life is precious, I try to take advantage of every good hour. Yes, it is hour to hour, but I haven't had to go to the ER for my asthma in over a year. If you find the right team, have the right support at home, and a good plan is made as a team, you can take your life back-- even with severe asthma.
Do you get muscle cramps caused by your asthma medicine?