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mariabrat (@mariabrat)

Low T-Cell - Bone Marrow Biopsy

Blood Cancers & Disorders | Last Active: 3 days ago | Replies (40)

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@mariabrat

What you are saying is absolutely right, it feels very hard in practice. How do you cope with bad thoughts? Its constantly in my head. Im thinking “oh I wont be able to do that this summer since Im sick”. I truly have to stop googling has its not bringing anywhere. Do you have good podcast to recommend or movie? Also, thanks a lot for sharing the article and your story – Its really great.

I have been tested for CMV, Epstein Barr and many types of flus. I do not have any swollen lymph node (confirmed on MRI). I do remember that I never had really high lymphocytes in the last 4 years, I was always in the low minimum – Maybe its an immune deficiency? Its been going on since october (on and off) so its seems strange for a virus to last that long.

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Replies to "What you are saying is absolutely right, it feels very hard in practice. How do you..."

@mariabrat Oh my gosh, yes! Stay off the internet. It only serves to bring every imaginable disease or malady to the forefront, along with the horror stories. Speculation, especially when there’s no diagnosis is really pointless.

How do I cope with bad thoughts? I allow myself about 1 minute for a pity party and a good cry. I deal with anger the same way. Then I joke about pulling up my big girl panties and move on. In all honesty, the past 2 years I’d ask myself what’s the worst that can happen? I’ll either make it or I won’t. I’d have the same thoughts that you mentioned. That I’d miss so much because of being ill. I won’t be able to do ‘this’ or “that” and miss the summer or a wedding, etc. Or if I die my family will be so sad and that really bothered me. But I had long talks with my husband and daughter and we dealt with whatever happened day by day. Positivity remains crucial. Even if it means keeping my head in the sand, it works for me. ☺️ I use the same approach when having to wait for test results. I guess I just never let myself dwell on it by diversion and distraction.

I don’t actually have a favorite podcast. I’d always fall asleep listening to those or even my audio books!! LOL. During treatment I binged a lot on Netflix and Prime. Do you like self help books and mindfulness meditations? If so I can get you a list of titles and names. My daughter and another friend both listen extensively and have favorites who inspire or relax them. For me, I needed visual stimulus and mindless entertainment. Things that made me laugh. I stayed away from anything that brought tears or were too heavy. Light, airy, fluff. Makes me sound shallow, but that’s what I needed at the time. Anyway, it’s whatever works for you that’s important.
I’m sure there are others in this community who will pop up with some recommendations for you.

The two weeks will go by faster than you think. Do you enjoy walking outside? Do you have any hobbies?