I Remain ‘Fearlessly Fearful’ After Another Diagnosis

I Remain ‘Fearlessly Fearful’ After Another Diagnosis

hurricane

Lupus sucks! There, I’ve said it. I have a feeling that anyone battling this disease, or anyone watching a loved one do so, will agree. If you believe in the Bible, lupus to me is the true definition of the devil. It comes to steal, kill, and destroy.

In the last chapter of my healthy life, people said I was fearless. What they didn’t know was that I had a lot of fear, but I never let it hold me back. Lupus has created many new fears. Before lupus, I couldn’t relate to panic and anxiety attacks. Now, I am quite familiar with them, and like lupus, they also suck.

Recently, I arrived back in the U.S. No matter where I am, I try to keep up on my healthcare. I had a purpose when I arrived that required me to go to a Veterans Affairs (VA) hospital. I had many tests, and I was later told over the phone that I now have a lung disease. The woman I spoke with said I would have to wait to talk to a doctor. So I went into research mode.

Not knowing exactly what I had — and the possibilities I found online offered the worst outcomes — sent me into an emotional tailspin. I cried until I fell asleep and was startled awake with an anxiety attack. Then I calmed down, researched some more, and found a group of diseases called interstitial lung disease. Still, this finding left me feeling fearful.

The VA system is overcrowded, so seeing doctors quickly doesn’t typically happen. I was told early in June that this lung disease was a definite diagnosis, but I wasn’t told which type of lung disease I had until late July.

Every night during that period I would tell myself not to freak out, that no matter what, I was going to live my best life. I would lie down to sleep and a few hours later awaken with heart pounding, in a cold sweat, and breathing heavily.

When I finally saw the doctor, I was angry. He told me that I have a type of interstitial lung disease, that it’s related to lupus, that it’s not fatal, and that no medication can help it. We need to keep an eye on it — I will have tests again in February — so that it doesn’t progress into a bunch of other things that have really long names. I have never been a smoker or had any lung issues before lupus. It was caused initially by inflammation in my lungs. (I was in the hospital for eight days last year with swollen lungs, and I had fluid on my lungs earlier this year.)

I explained to the doctor that to give someone a scary diagnosis with no real information should be considered cruel and unusual punishment. I have reconciled my life a few times by telling myself that no matter how healthy anyone is, we were all on our way out as soon as we checked in. However, to have the Grim Reaper pull up next to you and fist bump you every so often like he’s your best bud is frustrating and scary.

I rally my mind and then I manage to smile and find the positive in my situation. I think that makes me appear fearless, but I can assure you that fear is a dirty little F-word that I am quite familiar with. But it doesn’t pay bills or buy groceries, so I try my best to confront it and kick it out the door. Under the circumstances, this fear is natural, but I think holding on to it does more harm than good. So, I say do your best to “kick that fear outta here!”

***

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.

7 comments

  1. Christine says:

    Hello my dear;
    Recently went to my Internist. Saw the Physicians Assistant. She said it was interstitial lung inflammation. Put me on 40 mg Prednisone for 5 days. If I ran fever or got worse, just go to the ER not back to DR office. Nothing more they can do. You are right it is kind of depressing: no relief, dry cough, hard to breathe. I already take Advair, Spireva and use a nebulizer with meds in it for Asthama/breathing issues. This is different….shows on Xray and your chest crackles when breathing. Just another symptom to live with. So glad we have others to listen and share with. Tired…..tired of NEW developments. Hoping you feel better. thanks for sharing and listening. Trying CBD oil. Recommended by Lupus Chick.
    Hugs and well wishes.

    • Kellie McRae says:

      Hi Christine, I am sorry that you have to battle this nonsense. It’s so frustrating but all we can do is our best. I tried CBD oil, didn’t really work for me so I started using a vape with the recently legalized THC oil, HOWEVER now with the lung issue, I’m afraid to add smoke of any nature to my body. So I shall have to find another solution to help with the pain that comes with lupus. I am glad we have others who can relate to what we are dealing with as well. I have told others, I never knew the importance of a support group until I needed one. I’m always happy to hear what you have to say. I wish I could fix it but I know for me, having others who truly understand goes a long way. Wishing you high energy and low pain. Thanks for stopping over.

  2. Pat Sommer says:

    So sorry to hear of this diagnosis!
    When no options were offered for my daughter’s newly found ailment, I googled lastest treatment for blank and breakthrough for blank.
    That led me to top researchers and practioners. I initiated contact and was pleaseantly surprised that the world’s best offered their knowledge to me.
    Then I got a data base of where treatment is offered. The insurance part was the trickiest part!

    Strategy from Patients Playbook by Leslie Michelson

    • Kellie McRae says:

      Thanks so much Pat. I am happy that you got great assistance from the medical community. I have no dobut that there are some great healthcare professionals out there but many do indeed have their hands tied with the insurance carriers. I also think a lot of them are just as frustrated as their patients. I am all about some google lol We must research as well in order to be informed. I hope your daughter is feeling better & that the treatments that you found are helping her. All the best.

  3. carol carney says:

    Hi Kellie, so sorry to hear about your new problem…I also have Interstitial lung disease which none of my dr’s actually told me that…and I had no clue what it was or caused from. My brother-in-law just passed from a very aggressive Interstitial lung disease (like about a week) they do not know if he had any autoimmune diseases but I think they might have tested him but said it would take 14 days to get results so my sister and her 3 daughters have to wait…all three of my neices have some type of autoimmune disease..my sister dosen’t ..as far as we know..my sister and brother-in-law live in Florida and he was near the red tide..which can cause respirtory problems…There is a place in Tampa Fl that has some kind of treatment where they take some of your own blood or bone marrow and then they process it somehow and put it back in…you can go to the Lung Institute.com and check it out..apparently there are over 200 different types of this..I just saw my reg dr and asked her what kind did I have and was not really satisfied with the answer….I know I have scare tissue on my lungs from having pneumonia so many times, plus PE’s in both lungs…I just had an episode the night before (this happens quite often)..but I get freezing cold, shaking, can’t breath even though I’m on oxygen..it’s in my right lung…I do have nodules in that lung also…but I always ended up in ER until someone gave my a
    nebulizer.. and that helps alot..but it’s getting worse as time goes by as far as what I cough up..this time it was plain thick blood no phlegm in it as before….so I guess I need to make an appt with my pulmonary dr as soon as possible..please..let us know how you are doing and if you find any good info…I’ll do the same..Thanks

    • Kellie McRae says:

      Oh Carol, first let me say I’m so sorry for your loss. We deal with so much. If you are not battling this, it’s so hard for people to relate to. I’m sad every time I hear of others suffering, I just wish I could alleviate the pain behind it all. I try not to get angry because it won’t do any good but I do sometimes feel like I was a “healthy” person for nothing. I also try to put things into perspective (not that it helps) that death is a natural part of life but none of us are rushing to get there and we certainly don’t want to suffer as we head that way. It’s hard trying to explain that to families left behind or as those dealing with the pain of it all, how to even fully understand it ourselves. I hope you find some relief and I hope that the pulmonary specialist has some good news that will be helpful.

Leave a Comment

Your email address will not be published. Required fields are marked *