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Helen
@helem

Posts: 33
Joined: Oct 06, 2018

My family

Posted by @helem, Mon, Oct 22 10:33am

I just called my mother for the fifth time in three days. She is 94 and I couldn’t get in touch with her. Finally this morning I talked to her and she said she was mad at me and not talking to me because I was going away to the Caribbean for a week at Christmas. I have seen her every Christmas for 66 years. I came up from Charlottesville, VA to Princeton, NJ when my husband was alive and my kids were little AND older. My boyfriend and I were going to see her at Thanksgiving. I write all this because I was very very ill all weekend. I have ringing in my ears , diarrhea, weakness, and my thyroid problem has gone haywire. I was finally diagnosed last July with MAC. I went to every doctor but i persisted for 7 years… yes seven years with a persistent cough that would come and go. My family in NJ was so used to me being sick for 3 months at a time that they trivialized my problem. They actually think I have pretended to be sick! Finally I got an internist and pulmonologist who believed me! Did anyone lose family support? Also, I need ideas on how to take the meds. Also, did anyone’s Thyroid go haywire? My TSH is 25 and I have been beyond exhausted. Help!!!

REPLY

@helem I am so sorry about your situation. Your thyroid issue is noteworthy. That was diagnosed before my MAC was – I have taken thyroid since age 18 and am almost 70. All of a sudden the numbers changed, and my doctor said, “I’ve noticed you stopped taking your thyroid medication.” I told her I have never missed a day since age 18. So there you go! She upped it, but I have to have it checked frequently (at least 2x a year) because it changes. Don’t take biotin as that messes up blood work. Try not to feel guilty about taking a Christmas vacation. My husband literally moved in with his parents for three years in Tennessee till they passed while his dear sweet wife (me) stayed in Connecticut (mostly) with six children still at home (we have ten) and a teaching job – so not a good plan! In my opinion nothing good comes from that kind of guilt! As far as the meds go the ear issues can be resolved by changing azithromycin to clarithromycin. Some people do better on just three days of the meds as opposed to seven days. Hopefully you will be ok to go on and enjoy that vacation! I’ll be praying for that for you.

@helem I think lack of family and friend understanding is a problem with lots of people who have MAC. What's the fuss about some coughing and being tired. I don't try to explain any more. Part of living with the disease is learning to put yourself first… otherwise you might just fall on the floor and stay there.
Tell your mother you understand her disappointment and leave it at that. Take the vacation, you need it.

@irene5

@helem I am so sorry about your situation. Your thyroid issue is noteworthy. That was diagnosed before my MAC was – I have taken thyroid since age 18 and am almost 70. All of a sudden the numbers changed, and my doctor said, “I’ve noticed you stopped taking your thyroid medication.” I told her I have never missed a day since age 18. So there you go! She upped it, but I have to have it checked frequently (at least 2x a year) because it changes. Don’t take biotin as that messes up blood work. Try not to feel guilty about taking a Christmas vacation. My husband literally moved in with his parents for three years in Tennessee till they passed while his dear sweet wife (me) stayed in Connecticut (mostly) with six children still at home (we have ten) and a teaching job – so not a good plan! In my opinion nothing good comes from that kind of guilt! As far as the meds go the ear issues can be resolved by changing azithromycin to clarithromycin. Some people do better on just three days of the meds as opposed to seven days. Hopefully you will be ok to go on and enjoy that vacation! I’ll be praying for that for you.

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@flib

@helem I think lack of family and friend understanding is a problem with lots of people who have MAC. What's the fuss about some coughing and being tired. I don't try to explain any more. Part of living with the disease is learning to put yourself first… otherwise you might just fall on the floor and stay there.
Tell your mother you understand her disappointment and leave it at that. Take the vacation, you need it.

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@flib Great advice to @helem!

@helem Good morning. I have to agree, us mac people get very little sympathy, especially from family members. I coughed constantly for so many years that my husband became blind to it. Seriously, I have had full blown asthma attacks and almost fell out; and he didn't even notice. Years back, my siblings never understood the severity of what I was going through. Thank goodness for this Connect site where we all 'get it' and we understand all of the hidden ramifications of this disease.

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