I’m Sick of My Chronic Cough and Have Lost Faith in a Medical Solution

I’m Sick of My Chronic Cough and Have Lost Faith in a Medical Solution
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I’m frustrated with my body that causes me considerable discomfort and uncertainty. Since my diagnosis, I’ve had an average of four hospital stays a year. I have done my best to avoid an admission this year. I don’t see my doctor as often as I should, but it’s not because I don’t care about my body. Instead, I wonder what is the point of paying for medical care when nothing changes.

Earlier in the year, my lung problems were so severe that I would cough until I felt lightheaded and dizzy, and I often lost my meals. I went to a rheumatologist and a pulmonary specialist. They both ran expensive tests and prescribed medications that did nothing for me. Months later, I’m still coughing until I’m dizzy, lightheaded, and throwing up.

I am sick of coughing and tired of paying out tons of money for zero results. I have concluded that because of my lungs, my cough will continue. When I first received my diagnosis, I began to experience digestive issues. I’ve been prescribed all manner of treatments: antacids, pills, gels, capsules. I’ve tried various natural remedies, including apple cider vinegar, activated charcoal, cream of tartar, and chamomile tea, but my digestive problems persist.

I am starting to believe that doctors are of little help to me.

Before I became ill, I was a very healthy person and would rarely catch a cold, perhaps once every five years. I remember attending a general checkup where my doctors were impressed at my triglyceride levels. When I started a life insurance plan, I received the lowest rate because my bloodwork indicated that I was in phenomenally good health. Then lupus came along and caught me completely off guard.

While I realize that medicines have their place, I am losing faith in finding any relief from my symptoms, no matter how many doctors I visit. I don’t know how to process this. If you have a chronic cough, you know that it takes a toll on your body. I can wake up feeling relatively energetic, cough for 45 minutes to an hour, and end up exhausted and unable to do much afterward. The silver lining is that my abdominal muscles are toned from the coughing contractions.

Even practicing pulmonary hygiene doesn’t eliminate the torture of the constant coughing. The secretions draining into my stomach worsen my digestive issues. Once upon a time, I enjoyed cooking. Now I live on smoothies and only eat when my stomach is chewing on my backbone. I am often so hungry that I’m dizzy, but avoid eating as I don’t know how my body will respond.

I can have a bowl of pasta today with no digestive issues. Tomorrow, the same dish might give me reflux and indigestion, and I could lose the meal within 10 minutes of eating it. I visit doctors without finding relief, while my sadness, anger, frustration, and hunger grow.

I have scheduled a new doctor’s appointment because I know they are somewhat helpful. But lately, I realize that it’s unrealistic to expect them to have a solution for many of my symptoms.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.
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Kellie is a lupus warrior who spends her time teaching many about the incurable disease she battles with a smile on her face. She travels the world, writes articles, has an active YouTube channel and creates coloring and activity books for both adults and children. She is known as Queen Bubbly Bee because no matter what is going on with her body, she always manages to find the silver lining.

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6 comments

  1. Dr Karen says:

    Hi. I have had SLE/RA plus other AI’s for 26 yrs. One problem that I blamed on all the drugs was constant upper respiratory infections. I ended up in an immunologist’s office..which is where I should have started. I have CVID – a primary immunodeficiency. The immunologists believe PI comes first-it’s ignored…then your body starts screaming (AI’s). I would suggest you RUN to find an immunologist to test you for CVID. I was diagnosed in June. Started immunoglobulin in Aug. Three months later of SCIG -I have NO ANA MARKER. I’ve NEVER had neg ana!My 24 yo daughter “looks just like me” she was diagnosed first with Fibro, then Lupus then about 7 other AI’s. I dragged her into my immuno -she has CVID as well (it follows the X genetically). She’s furious- she’s been sick her whole life…and NO ONE (despite all of our MD’s rheumies, GP’s ENT’s knowing we both had chronic URI ) did anything. Immunologists are where you need to go (IMHO). I wish someone had told me this when I was 34 and first diagnosed. Go to http://www.primaryimmune.org. See if you meet the criteria (there are almost 400 PI’s. So you may not have CVID but there are a lot more. I’m in CO…so if you are nearby I’m happy to send you to my immunologist. He’s saved my life. All my AI’s are low, my pain is lower, my energy is higher. All bc I finally was diagnosed with low Igg low IgA, low T cells, High Mast cells, and a bunch of other stuff…Please. Consider it…Namaste, Dr Karen

    • Kellie McRae says:

      Wow, I was making a new appointment with a different Pulmonology doctor. I feel like I live in some specialists office. I am open to finding solutions because this coughing is insane and it really zaps all of my energy. Thanks for this information, I’m definitely going to check into this.

  2. Michelle says:

    Sounds like what I have. I’ve been coughing so long now that I kind of found a trick not to cough at night. It works for me but I don’t know about anyone else. I’m turning 29 this June and I’ve had lupus since I was 13. My chronic cough started about 4 or 5 years ago. But it was only about last year when I found out the trick that works for me at night. (Scoot tongue back and stick it to roof of mouth and just breathe through nose.. I noticed if I don’t do that at night I will be coughing all night. I guess same thing during the day but sometimes I just let myself cough during the day. It’s at night when I do it so I can get some sleep)… The doctors don’t anything for my cough.

    • Kellie McRae says:

      Hi Michelle, Fortunately for me, my doctors have actually been able to give me some relief. We learned that while I do have issues with my lungs that much of the coughing was because of tummy issues (really bad reflux) and an infection in both my esophogas and my stomach. The medications they have given me have been a source of huge relief. I am happy you found a way to stop your night time coughing, I really wish they could find a solution for all of your coughing. Its not fun to always cough, for me, it really was rattling my little boney body and creating other issues. I hope they will keep trying to find a solution for you and that eventually they will succeed.

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